Even though I am married to a great guy, I have been pretty depressed for a while now. I just hate being unable to drive or work, thus far. I am confined to our apt. nearly every day. My family rarely ever comes to see or help me, even though I have made it abundantly clear that I need and want them to. I have pretty severe N and its full tetrad of symptoms, even with the Rx treatments I'm taking. I take provigil for EDS, Xyrem for C, HH, and SP, and Effexor XR for daytime C, HH, and SP control. I also take other meds for my other health conditions, 10-11 total daily. I take other meds for a heart murmur (Mitral Valve Prolapse Syndrome) - Nadolol, Antibiotic Prophylaxis- Macrobid, Ditropan XL, Allergies- Flonase and Clarinex XL, Hypothyroidism- Levothyroxine, Birth Control Hormones for Endometriosis, and Albuterol inhaler for some asthmatic like symptoms. I began to onset with Narcolepsy when I was 20, a sophomore in college, with EDS and the sleep attacks, but I just thought it was because I was a diligent student. I wasn't until the week of 9/11/01 that the psychological trauma of that horrible day triggered all the other symptoms to take over my life. Within days after the attacks, I began having vivid nightmares, sleep paralysis happening concurrently with hypnologic hallucinations, etc. I would swear I hear the terrorists or spies breaking in to our apt., I could feel the heat and pain of atomic warfare, I could feel them poking and prodding me, I could see them watching me. This obviously freaked not only me, but also my husband, then fiancé', Kenneth. I would tremble and shake a lot, which was me fighting or trying to fight the paralysis and he was scared for me. Fortunately I knew what SP was, so I researched it on the net and began trying to convince my parents that something was wrong and that it was sleep related. That November is when I began experiencing cataplexy, but back then I had no idea what the crap it was. I would laugh or get angry at Kenneth, and then I would feel my knees give out. The strangest feeling ever! By that Christmas, I was having full body collapses, even extended severe SP and Cataplexy episodes lasting 30 or more min. By Jan. my Mom was also convinced I had Narcolepsy, but we had a terrible time with health insurance--hers didn't cover sleep disorders, so I had to wait to be transferred to my Dad's. I was finally able to get diagnosed in Feb. 2002.
Even with treatment, I have been unable to drive and, thus, work so far.
Two years ago when I became too scared to drive anymore, because I would get sleep attacks and try to fight them and this would cause cataplexy to come on, Kenneth understood. Of course, he worried greatly about how we would make it financially. Currently, I am trying to get a job with Alpine Access as a home based customer service rep. I am heart broken about not having kids of our own. I take so many meds to be moderately functional, but to be off them to carry a child would essentially be dangerous (esp. my cataplexy) and torture to say the least!
Stress, illness, level of sleepiness, etc. are all factors which exacerbate my N, C, and SP. Before I stopped driving, I drove only a very little around the town I lived in, like 5-10mi. max.
I've been a little depressed lately, due to my being confined to our apt. nearly all the time. But, we plan on joining a fitness club so maybe we can get in a lot better shape and meet other people and make friends. It sucks not being able to drive, and I rarely see my family anymore. They're just too busy with their own lives. My best friends are Kenneth and God, the ones I see each day. It's a lonely life having Narcolepsy; esp. not being able to drive. I am trying to get a job with Alpine Access as a homebound customer service rep. That would definitely help our finances to where we could maybe get a house someday. I am excited and thank the lord that I got a scholarship to the 2006 Narcolepsy Network National Conference this year in Dallas. I already found my roommate here on my space! I wish Narcolepsy on no one; it is a life debilitator and dream breaker!
I often experience some minor memory problems/loss... Like where did I put that darn thing, what was I going to say/do, and Did that really happen or did I just dream it?, etc. I am no longer eligible for SSI, because a husband makes over (barely) the max limit for 2 persons now. Though I recently did receive a minimal amount of back pay for the 2 year prior. I never had the chance to get enough work credits to apply for SSDI.
Sunday, December 3, 2006
Narcolepsy: My Nightmare Never Ends
I am a housewife with the life debilitating sleeping disorder Narcolepsy. I have the full tetrad of symptoms: Excessive Daytime Sleepiness, Cataplexy, Sleep Paralysis, and Hypnogic Hallucianations. I can not drive and have been unable to work, thus far. I often get severely depressed and lonely due to the chonic confinement in our apartment. I dislike pettiness, discrimination, fake/arrogant superficial people and people who ignore those in need.
Kenneth is a model husband whom I adore. He is a wonderfull, loving person who is amazingly intelligent and adorable! With out him, I'd have no daily human contact or help functioning and taking care of myself day to day. Thank you Lord for the Miraculous blessing of Kenneth, you are my only other true friend in this world I can count on.
When it comes to politics, I am very passionately in favor of helping the ones most everyone else ignores and steps on: the poor, disabled, those discriminated against, etc. I tried to get Social Security SSI since June 2004, and I was determined officially disabled by an Administative Law Judge June 2006. I have received minimal back pay for the past 2 years of suffering in poverty. However, Social Security deemed us financialy inelligible since May 2006 when Kenneth became employed by the USPS, because he makes a little over the gross income maximum per month limit for 2 persons to get SSI.
I never had the chance to work and get enough credits to apply for SSDI! I received No Money, no Medicaid, nor Medicare, or even Food Stamps from the government while we struggled slightly less than the homeless! Did you know that you must be pregnant or already on SSI to receive Medicaid? Rediculous, isn't it?!!!! The terrifying reality is that by no means am I alone, so many others suffer needlessly. However, there are few resources to help those waiting for Social Security to finnally get off its bum and help us get our much needed presciptions and medical care. Huh, we couldn't afford the care I needed! Without Prescription Assistance Programs and clinics for the poor, I would rather die than constantly be trapped a prisioner in my Narcolepsy's REM associated symptoms of paralysis (sleep paralyisis, Cataplexy, and Hypnogogic/Hypnomyoptic Halluciantions). How are we to make ends meet, if no one really cares except God!!!! I didn't ask for this life debiliating disorder any more than I asked to be born!!! Shame....on the nation's people who claim to be rooted in Christain theology and values and turn their eyes the other way!!!!!! For Shame! Together, we can rise up, and make this country the jewel of humanity and philantropy which it should!
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