Journey To Life Out Of The Dark

Hi everyone. My name is Skye. December of 2019 I was at work and I suddenly had the worst stomach pain I’d ever had. I dropped to the ground and closed my eyes. When I opened them I couldn’t see. I was blind. I tried to stand and I couldn’t. I was too weak from the pain. Eventually I managed to pull myself up on the counter at work and use walls to support me until I blindly got to a chair and sat for a bit. I would carry on for 2 1/2 months that way. Most of the day unable to see, barely able to walk, at the end of the day sit up unsupported, speak without gasping for air after a few words, and even breathe right. Just rolling over in bed could throw me into an asthma attack. I was so weak I didn’t even have the strength to crawl. This progressed and got better throughout the journey as my csf levels fluctuated. I’ll explain in a minute. After bouncing from doctor to doctor and a botched lumbar puncture bedside in the ER in May of 2020 I found out I have an atypical case of a rare condition called Idiopathic Intracranial Hypertension. Also known as pseudo tumor, or “fake tumor.” My body thinks my brain has a tumor that isn’t there, so I get a lot of the symptoms of a brain tumor. Due to my case being so atypical I have a lot more symptoms as well. The stomach pain as it turned out was excess cerebrospinal fluid pressing on my brain squeezing out constant mini seizures 24/7. My brain figured this should hurt and just sent a random pain signal to my stomach. To this day I still know that feeling and know I have to act quick if I feel that. This fluid acts as a cushion between your brain and your skull, as well as between your spine and spinal cord. It carries hormones and nutrients in the body as well as filtering waste. I had a 3 hour EEG done and they couldn’t see where the seizures started or stopped. I’ve dealt with seizures since I was 1, but this became a whole new beast once I started this battle. New types of seizures I didn’t know existed. Having to go to work, run into a walk in cooler or bathroom, seize, and then get back to work as if nothing happened as I couldn’t afford the time off. Multiple times a shift. I don’t know how I’ve survived this long and no doctor can explain it either. I would be thrown out of work for months at a time anyway due to working myself to the point where I couldn’t function. My medical expenses were more than I could afford and I desperately tried to keep myself afloat. I was warned the medication I was put on for this would most likely throw me into liver failure in 2 years and I’d need a liver transplant. This was at a low dose. 5 years in I’m on the highest dose they’ll give me, its nowhere near enough, it’s given me kidney stones, affects my nerves in my limbs, interacts with other medications, affects my weight and plenty of other things. The seizures even started stumping doctors. My legs would become paralyzed, I’d be conscious for them, (which I later found out I had a weird case of what are called focal seizures) I’d drop to the ground and be paralyzed for around half an hour and not be able to do anything. Just lay there with my thoughts. My mental health was heavily impacted by all this. I relied on those around me in order to eat, get my prescriptions, get to and from work, though I made that work way longer than I should have. In between I started getting amnesia spells daily that lasted up to 18 hours a day. Only supposed to be max 12. I’d escape the house and end up half a mile away about to Uber to the hospital without an ID, insurance card, or knowledge of even what country I was in. Everyone around me was so patient for such a long time. Most people didn’t know anything was wrong unless I told them. I worked so hard for that at work. I was put on so many medications I didn’t need and was a walking zombie. I could barely function or think for years. This condition is really taking it’s toll on my body now. I have permanent vision loss, I have a bit of permanent damage to my brain. My memory got way worse as my seizures got way worse at one point. I was told that I may get some of my memory back after I got the correct treatment, but not all. Mainly long term. Things from years ago. Also, things that I was just told a couple minutes ago as well started going out the window. It’s touch and go, but it’s getting better over time as I’ve gotten a better handle on the seizures.

I’ve struck out in 3 states for proper care so far. The best place in the world to get treatment for someone with my disorder is at a place called Keck Hospital in Los Angeles, California. They specialize in atypical cases and most importantly, my biggest issue which is something called a spontaneous csf leak. The cerebrospinal fluid pressure in my body builds up to the point where a hole bursts in the lining where the fluid is held. It leaks into your body. 40 odd years ago when medical textbooks were printed they thought it was impossible for this to happen. Even though the dura, which is the space where the fluid is held is thinner than an artery, which many of you know can burst from an aneurysm. There’s tons of research supporting that these exist. Even government research. These csf leaks are debilitating. You have to stare at the ceiling, unable to even tilt your head down, arms at your sides, legs together and lay as still as possible until you heal. I’ve been bed bound for up to 3 months at a time because my body is having such a hard time fixing them at this point. They’re only supposed to last max a week. I just healed from my 14th leak in 5 years. I had to find tricks online to heal faster that countless doctors failed to tell me about. I was able to heal in a week for only the second time in 5 years of these. I’ve only managed to get the procedure to fix it for 8 of them. The pain is so horrific. I was left to sit up in the waiting room at the ER. My heart rate was at 243bpm when they got me back. Resting heart rate is supposed to be between 60-100. People have seizures, heart attacks, and strokes due to the pain and stress on their bodies. I’ve had PLENTY of seizures as a result of this. My heart is working overtime trying to compensate for what’s going on. I’ve been told to go to a cardiologist as my heart was going so fast just sitting there. Not even during a leak. My body is tired and the more doctors I try, the more who don’t believe my story, the less hope I have that I could get the surgery I need to go into remission. It’s a simple hour and a half long surgery. I’ve almost had it happen twice, but because my symptoms aren’t textbook people are afraid of getting sued or losing their license for giving me the surgery they all agree I need!!

You don’t even have to be from the United States to know how expensive it is in Los Angeles. I’ve been looking at apartments near the hospital and they run $3k a month for places with which residents say have mold and cockroaches running around. Im searching for any cheaper places that may be okay and not require pay stubs, but I am not having luck yet. I have an 8 year old cat who’s my world that I have to go pick up from the last state I lived in. I couldn’t take her to where I had to move this past year. I’m not letting her live in a place that could make her sick. I’m praying for 2 years worth of rent covered as I’m disabled. It’s going to take around a year to get this sorted out with doctors, surgery, and recovery at the quickest as it is brain surgery. I can’t work a normal job that requires running around as it’s too hard on my body and I’ve put in over 500 applications before for secretary positions, phone sales, call centers. As I have no experience I never got hired. My health is so unpredictable I most likely would’ve been fired anyway as I was fired by one job and had to leave another. I’ve applied for Social Security and Disability though I doubt I’ll get approved. Even if I do it most likely won’t be enough for me to live off of. I have my own small business, but I make very little (Took over 2 months for me to make $250) and I’m not getting much business despite the reputation I’ve built. I’m looking into getting certified for other services to be able to offer more things, but that costs hundreds of dollars I don’t have. Any money given will go towards my treatment, living expenses, and travel. Even if it’s just going to places out of network in state or in neighboring states. Nothing with my business. I’m going to save what I can from what I make and work off that. It won’t be touched for anything other than travel and living expenses to get there.

I’m pushing to be able to LIVE. Not just survive. I want to help as many people as I can. Show as many people as I can they’re not alone in this world, even if it feels that way. I don’t like taking things from people, especially money if I can’t pay it back or give something in return. This is unfortunately a time where I have to put my pride aside. When I’ve spent literal years of my life on this journey bed-bound it’s time to accept the help I need. Thank you to anyone who’s read this far. Thank you to anyone who shares this, donates, or sends prayers/healing/good energy my way. I’m doing everything in my power every day to wake up and make a difference in this world. Even if it’s just a kind word to a stranger. No matter the result of this that will never change. Thank you once again, and I hope to update you from the hospital in California!!

As a last note: Smile at that stranger on the street. Compliment that person with the cool shirt. Go talk to that person who seems cool!! Spread as much love as you possibly can in this world. We have so much love to give and this world needs all the love it can get. Always choose love at the end of the day. I love you all and I’m so thankful for every one of you who read this!! If anyone needs someone to talk to feel free to send me a message. It’s why I keep my DM’s open on Twitter and why I message random people to check on them on other social media platforms. Never underestimate the power you have as a human.

As it has for many others, music has played a huge part in my recovery. I’m a singer. I’ve been studying voice for 20 years, performing for 19, and been in the recording studio for 18. I started at 8 and will be turning 28 this year. Not being able to sing, write, or play instruments has been devastating. I couldn’t afford to keep my music up on streaming services. I took down the videos filmed during the past 5 years as they were nowhere near my standards. I broke down when I saw them with clear vision and a clear head. I keep finding my way back, but it’s hard. Some music kept me grounded throughout this time. My favorite bands have been some of the most supportive people to enter my life outside family. I hope to thank them one day. Little acts of kindness and kind words they’ve surely forgotten changed my life. Just as you won’t remember some of the most important advice someones ever gotten from you. You just said it off hand. Have confidence in yourself. Believe in yourself and you can achieve anything you’ve dreamed of. All love to everyone out here. ❤️