Have Me Live

Have you ever been sea sick? Or been thrown in a pool drunk & don't know which way is up? Do you remember how dizzy you felt, the  unending nausea and spinning and vomiting? Did you ever think to yourself, "I wish I were dead just to get out of this spinning, dizzy, vomiting  hell?" Well, if you have then you kinda know what much of my life has been like since age 7.  My name is Nikki, and I suffer from an autoimmune disorder which generates, amoung others, a rare, uncatagorized neurological syndrome which effects my Vestibular system,. There isn't even s name for what I have.

Over the years, I've been diagnosed with everything from Meneieres Disease to Endolymphatic Hydrops, to Vestibular Migraine, none of which generated any treatment that worked. I've been seen by the best, and no one has been able to accurately treat or diagnose my disorder. But they all say when they see me, when I tell them my history, that they are amazed I am still alive. See, they, the doctors, like many of my family and friends, believe that they would've killed themselves long ago had they been me, had they endured what I've gone through.  And, sadly, that's just the tip of the iceberg.

But, I hate focusing on what's wrong with me. I'm strong. I'm a survivor. I've always relied on myself and was raised to be a true American, a rugged individualist who relies on autonomy and self will. It got me through college, where I worked full time while carrying 15-18 hours each semester & graduated with 2 BA's and no debt. My family had money, but they chose not to help me out, feeling that I would learn more self sufficiency if I did it myself. When graduate school came, I did the same thing again, but by then, my illness had intruded more into my life, taking larger and larger bites out of my time like a hungry predator. 

Let me describe an attack so you'll know a bit what it's like: I'd usually be dreaming, and in the dream, in the middle of the night, I'd start flipping around, If I were flying in my dream, I'd be turning dizzily over and over in space so much so, that I'd awake in a cold sweat to realize that it wasn't the dream that was making me dizzy,  that I was in fact actually dizzy. I'd start sweating profusely, get very hot, my eyes wouldn't focus, but involuntarily moved from side to side, and along with the dizziness or vertigo, the nausea would hit. After a few rounds of this, the sweating and spinning and severe nausea, the vomiting would take hold and if I could crawl to the bathroom in time I'd stay there, vomiting into the toilet, sweating and spinning with no reprieve, until I'd pass out. This would last 12-24 hours and once I could no longer vomit, I was left with just the other symptoms, but finally, st long last, I could sleep without having to wake and throw up every 20 minutes. And then, I'd just be really really dizzy for days afterwards.

It first started when I was very young, at 7 years old. I managed to get through school, college and almost finish grad school before it affected my life significantly. When I was younger, I'd just pull myself up off the bsthrooom floor, or pull our my IV's in the hospital or ER & go on my merry way, putting the whole ordeal out of mind, like it never happened. I was too busy with life, to hungry to live, to let a mere illness no matter how bad, affect my life goals. But by grad school, if was apparent that I had a problem.

Every job I've ever had I had to leave due to illness. Every person who's known me very long knows about this because many have had to take me to hospital. I haven't been able to work for over a decade, and within the last few years, my attacks have grown increasingly worse, and closer together. 

Ive been able to somehow survive on the money I'd earned while I could still work, never knowing or even thinking that anyone including the government should or could help. But here I am, at the end of my rope, with a 17 year old son  with his own severe challenges, depending on me, and I cannot let him down. I've applied for SSI, was denied and am currently appealing. And in the interim, while I await their decision, I have no way to pay my bills. I am bedridden now and dizzy and nauseous the majority of the time, and rely on Roku and Apple TV to get me through, especially when I can't read or write like I used to, the way I want to.

im pretty isolated these days. I used to have a lot of friends, but when you're sick, they drop away because you're not able to maintain them. You cant make or keep appointments. You can't get out of the house many days on your own. It's hard to ask for help, any help, even asking someone to get your prescription from the pharmacy takes you all morning to psych yourself up to have enough courage to send a text and ask for help. Help that you desperately need.

i can tell you about desperation. I could accurately describe its contours and shapes, it's sounds and colors. But I believe all of us know desperation, each one a bit different but still the same. So , I know you can understand when I say to you that I have reach the point where I can no longer endure this desperation without help. 

While i I wait for the good folks at Social Security to review my appeal, I need some way to pay my bills. Without it, I won't have Internet access or online ability to access my library or Roku or even have a smart phone with only text and phone applications. I don't eat much. I've got TANF so my son and I won't starve, and I have a house to live in for the duration of my life. I just need a way to pay my monthly bills, and more important, know that others actually care. Who knows? Maybe you or someone else out there can empathize with my circumstances and will reach out with their hand, your hand, and help me stand up and feel strong enough to continue, to make it until I get SSI, to make it til I get an actual diagnosis with a treatment that works, maybe even a cure. I'm not holding out for all my hopes and dreams to be met, but it would be lovely to be able to pay my bills and not have to add the stress of financial insolvency to the list of things that haunt me, and hunt me at night in the depths of my dreams.

Donations

  • Anonymous 
    • $1,000 (Offline)
    • 44 mos
  • Connie McCarthy Sigel 
    • $1,000 
    • 44 mos
  • Connie Winterfield 
    • $25 
    • 45 mos
  • Anonymous 
    • $150 
    • 45 mos
  • Wendi Librach 
    • $25 
    • 45 mos

Organizer

Nikki Naparst 
Organizer
Portland, OR
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