My night terrors, nightmares, and sleepwalking began when I was seven years old. I was eleven when I notoriously "stopped sleeping." I saw something about a sleep study on tv and began begging for one. Instead, I was taken to a psychologist: it was depression. Then I was taken to a pediatrician: it was diet and vitamins and exercise. Nutritionists were next, then back to the therapist and given books about sleep and sleep hygiene exercises. By the time I was fourteen I was suffering from such severe sleep deprivation I was losing my mind, and often my motor skills. At fifteen I developed what was ultimately diagnosed as Common Migraine, Hemiplegic Migraine, and Cluster Headache (Trigeminal Autonomic Cephalgia; aka “the worst pain known to medical science;” aka “suicide disease.”). I had become frequently suicidal.
Without effective medications for either my mental health issues, headaches, and severe sleep issues (beginning my Senior Year of High School I had begun falling asleep out of nowhere, despite my insomnia, and no one could tell me why), I was not in terrific physical shape when I went away to college at eighteen. While suffering headaches and repeatedly “passing out” or falling asleep, I was raped. This ultimately escalated into an ordeal that included being repeatedly held hostage, assaulted, and kidnapped. It went on for weeks. I was in pain for much of it, passed out through some of it, remember way too much of it, as well as some bits of traumatic amnesia. After I was able to escape, I fled home and attempted suicide. What happened next is considered a “worst case scenario” for someone like me: I was misdiagnosed with “an atypical, unresponsive to medications” form of Bipolar Disorder. The hard medications began.
The psychiatric medications destroyed my cognitive abilities, and my body. I couldn’t think, could barely research or write anymore, couldn't make art, couldn't work. I was always confused, easily manipulated/used/abused, and fell in with terrible people. I made poor decisions and repeated mistakes. I began the psych hospital rounds where the medications became aggressive. The damage was devastating: I lost three children. I lost a son ten years ago at 19 weeks and twins three years ago at 19 weeks.
If I wanted my psych care and Disability, the government said I had to follow the rules, takes these meds, stay in this hospital, jump through these hoops. I lost at least ten years of my life to these medications! And three children. This breaks me. Before the medications I had a successful career as an Holocaust Historian with a specialty in Restitution. The meds turned my brain to mush and I could no longer work because I could no longer think enough to function. I was cognitively depressed by the medications. It was in and out of hospitals, constantly changing meds because each one made me more ill than the last. I was a guinea pig, I was brutalized.
In getting treatment for postpartum depression in recent years, the “bipolar” diagnosis was immediately removed. Chronic Acute Complex PTSD, a diagnosis I already had as well, was deemed to be the primary psych issue and predominant cause of my suicidal ideation (when Cluster Headaches didn’t make me suicidal, compounded with sleep deprivation). I was immediately removed from the damaging medication. As my body began to heal from the damage, it was discovered that I have several heart conditions... when the situation became so extreme I had what may have been a heart attack (cannot determine) July 9, 2016. I spent that October 13th, fighting off a heart attack for twelve hours, on the phone regularly with my cardiologist, sucking on the oxygen I have for Cluster Headache. My body finally responded to, and has settled in well, on heart medication. The improvement has been so dramatic that I was able to physically return to part-time work for the first time in years!
Ultimately, painful sexual issues caused by the sleeping disorders led me to a specialist in women’s sexual health, which led to countless diagnostic tests… including a sleep study. Finally! I am in the final diagnostic processes of Narcolepsy with Cataplexy (NWC) and the rare sleeping disorder Kleine-Levin Syndrome (KLS; aka “Sleeping Beauty Syndrome”). I am already in treatment for various issues related to cataplexy (loss of muscle tone), but it is quite bad at this point in my life and I need better medications. I start physical therapy soon for years of related physical damages. Both of these illnesses feature some obvious cognitive issues, depression, childlike behavior, confusion… symptoms easily – and devastatingly – mistaken for bipolar disorder in many narcoleptics. Those medications can do nothing to help us, can only hurt us. It is believed that I have had NWC presenting since age five and KLS since age seven, both full blown by age eleven = when I began begging for the sleep study. I knew what was wrong with me the whole time. Blessedly, the doctors are finally listening to this patient patient... who has become impatient for correct meds, already!
As long as it has taken for me get the correct diagnoses, it looks like the timing is right! Science has caught up to my unique suite of sleep disorder issues and in only recent years has the right medication for me become available. People are saying it’s a life-saving, game-changer for them, that they finally have a life now! Not only is it slaying the Migraines of narcoleptics, early studies show it can also prevent Cluster Headache! ALL of my specialists have approved me for this medication. It has the potential to give me a quality of life I have never known. It has the potential to be a miracle. But I need the correct doctors… who will be gathered at this conference. This is the best and fastest way for me to get a crash course in my illnesses, court the rest of the doctors I need to my team of specialists, and get me on the right medications ASAP. I have waited 34 years for this, I have been through too much simply because I was repeatedly denied a sleep study and was written off as “crazy.”
When I was kidnapped I had an opportunity to escape and save my own life with the assistance of the man I was dating at the time. At this point in my life, I have the opportunity to escape all the bad diagnoses, the damaging medications, the lack of correct treatment – I have the opportunity to escape this nightmare, finally, to save my own life again. Once again, I need an assist. Please help me go to the Narcolepsy Network Annual Conference this year. It will allow me to rapidly get the help I need, whereas it could take me another year to do it on my own. The keynote speaker is the world's leading specialist in KLS! Thank you.
I live on Disability, only have Medicare for insurance, and have extreme medical expenses. I work part-time to make ends meet, but I am pinching pennies to save for this trip. I am always recycling cans and bottles, and all recycling money will go towards this. I am selling old clothes that I will never fit into again. More money for the trip. I am applying for other, short-term part-time jobs, but I'm already fairly exhausted working again.
** GOAL: I hope to achieve a level of health that will allow me to work 20-30 hours on top of Disability. I currently cannot do that, I can work about 15-20 hours a week, sometimes while pushing it, and sleep on days I don't work. With the proper medications, I could accept the position of Part-Time Associate Sales Manager at work... and get full benefits! It's high time for my medical costs to stop eating me out of house and home. **
Narcolepsy Network Annual Conference
Keynote Speaker: Dr. Emmanuel Mignot, Kleine-Levin Syndrome Specialist
Marriott Portland Downtown Waterfront
Friday, October 27, 2017 – Sunday, October 30, 2017
Projected Expenses & Savings
1. Sponsor a Category! Sponsor a category listed below in part or in full by identifying the part of my trip to which you would like to contribute. All sponsors will be thanked publicly and receive a small, handmade gift.
2. Donate for Art! I can make you a custom journal or item of jewelry in exchange for a donation to this Medical Fund. Contact me to let me know what you would like me to make for you and what is your donation range.
3. Donate for Homemade Deep Oil Hair and Skin Treatments! (limited supplies) 1 oz bottle of Hair Oil for $40 and 1 oz of Cream Oil for $45. The more positive feedback/sales I get, the more batches I can make and sell in the future to help with my own medical expenses.
4. Donate for Family History Research! I can create a family tree for you at an hourly rate that would be donated into the fund, negotiated per project.
A. Conference Registration: $225 for Narcolepsy Network members
- Savings: Joined NN for $40, received Medical Alert wristband and wallet card; takes $150 off Conference Registration costs; includes lunches, snacks, nap room security
B. Hotel: $594.96 total
- Savings: Received Conference Group Room Rate of $129/night; joined Marriott Rewards program for free and receive free wifi in my room, saving $40
C. Train: $220.30, including $18 Travel Protection
- Savings: 15% off ticket price as a Disabled passenger
D. Transportation: $500 including tips
- Savings: Utilize Portland’s public transit system, Uber, Lyft, taxis, shuttles
E. Food: $300
- Savings: Lunch and Snacks will be provided during the Conference; food needed is primarily to keep in my room for sleep eating and caffeinated drinks.
F. Medication: $150
- Must purchase extra Cluster Headache medication and syringes; medications for Narcoleptic Cataplexy and associated disorders
G. Doctor Cards: $100
- Printing costs for several hundred info cards to pass out seeking an appropriate doctor
H. Additional Medical Costs: ???
- If I achieve more money than my goal, all overage donations will go towards doctor’s appointments, tests, and medications as I continue on my path to health
- Daphne Grant
- Steven Schnierer
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