Help! I can't afford my incurable rare diseases!

*REQUIRED DISCLAIMER:* My name is Deanna, and I live in Warner Robins, Georgia. This is my campaign, and I hope my story compels you to help. In short, I have a rare genetic disease, no health insurance, and no income. I've done everything humanly possible to fix that, but it has yielded minimal options. Because of that, any funds I raise will go toward all my healthcare costs as well as basic essentials I need to live. This includes self-pay for primary care visits, self-pay specialist visits, medical equipment, medical treatments, prescription medications, gas required to get to appointments, and any medical products I need, like electrolyte drinks, and over-the-counter items, food, clothing, and hygiene products. I am the ultimate beneficiary of these funds, and no one else. I will have the funds transferred to my zero-fee bank account, at which point I will access them via my debit card.

I have been trying to get a diagnosis for a mysterious illness for 12 years and counting. When you have no diagnosis, it tends to have a domino effect, eliminating almost everything from your life that has ever mattered . . . your relationships, your independence, your happiness, and, of course, your money.

I have always been sickly, it seems. When I was a young child, I had constant earaches and infections. When I was two, my intestines twisted upon themselves, and it nearly killed me. Emergency surgery saved my life. The ear infections did not stop until I was in my 20s, and I have also lived with chronic bronchitis from an early age. I do not smoke cigarettes or use recreational drugs of any kind - not even socially. I have never even tried a cigarette or a recreational drug of any kind. I've never even abused a prescription.

Then came middle school. I was late every day because I was so tired all the time. High school was difficult, too. Everyone had long since thought I had a learning disorder. I was often late because I was so exhausted, despite going to bed at a decent hour every day. It was during this time that I also attempted to learn to drive. This was also futile. Despite taking Driver's Ed classes and lessons, I totaled two cars and wrecked another one. I eventually had to give up on that because it just wasn't safe for me or others. I even attempted to hold down part-time jobs here and there. It was, of course, exhausting. Standing for more than 30 minutes was so painful that I could hardly think, and it left me trembling. I kept making mistakes, learning the material too slowly, and struggling just to do my job. I usually got fired not long after starting. But I never gave up. After an endless 4-year struggle, I graduated with a high school diploma.

I started to realize that something was wrong in college. I tried so hard to make college work. I studied frequently and to great lengths, I paid attention in class, and I didn't go to parties. No matter what I did or didn't do, I could not succeed. I was exhausted all the time, and it was even worse than it was in middle and high school. It got so bad that it became difficult to walk to class. I was sick all the time, and my brain just could not absorb the material. Still, I refused to give up. I went to the only doctor available in the small college town several times, but he was no help. He then stopped accepting my mom's insurance plan. I tried as long as I could and worked as hard as I could to get a degree, but my grades became worse and worse. The college eventually banned me. I knew then that something was really wrong. I didn't know what, but I knew something was amiss with me. I knew it wasn't something simple. I knew in my heart that my body was in a state of gross malfunction.

Before I completely accepted the fact that I have a chronic illness, I wanted to try one last time to be a normal, functioning human being. I still refused to give up. I found a job processing insurance paperwork at a desk for 8 hours a day. I went into it feeling positive and excited, ready to earn real money. But from the first day, I could feel my body breaking down. I became more and more exhausted every single day. I began having dizzy spells, heart palpitations, stomach aches and nausea, chest pain, and swelling in my legs and feet. Pretty soon, I could not wear some of my shoes. I was so exhausted that, several times, I had to go to a bathroom stall and weep because it was so overwhelming. I tried walking laps during my breaks, drinking more water, and getting more Vitamin B, but nothing helped. I was also unable to sufficiently learn the procedures from my training class. I had to take the class twice, and it was no use. This was not just anxiety or not eating enough vegetables. My body was breaking down. But no one seemed to believe me. Despite my very best efforts, I was unable to do my job. They terminated me just shy of the 4-month mark.

Once I stopped working, it took me three months to recover from it. For three months, I could not look at food without getting nauseous. I couldn't eat, I could barely drink anything, and I could hardly move. I slept for 13 hours a day, and it still wasn't enough. During that time, being awake took all the strength I had. I ended up losing 30 pounds during that time.

While I was working, I went to the doctor as often as possible. In fact, I went to a myriad of doctors. I saw physicians, physician's assistants, technicians, and specialists. I had chest x-rays, CBCs, sleep studies, EKGs, echocardiograms, exercise stress tests, a Holtor monitor, and even a test for mononucleosis. Nothing provided any answers. The EKG showed Mitral Valve Prolapse and Tricuspid Valve Regurgitation, but no one seemed concerned. I went to the doctor as often as I could until I no longer had insurance. My quest for a diagnosis had to end.

Once I lost my insurance, I knew it wasn't good. When my unemployment ran out, I knew it was even worse. My life had come to a complete halt. As a last-ditch effort, I applied for disability. Over the next two years, the government denied me twice, and I appealed each time. When I contacted a pro bono lawyer, she was rude, impatient, and unhelpful. I will never forget the words she said to me: "Without a diagnosis, you have no hope of getting disability." It was completely devastating.

It was a miserable time, and I fell into a deep depression. I wanted so badly to help myself, and I bent over backwards to do just that. But nothing was working. I cried myself to sleep almost every night for six months. I am disabled, so I can't work. And because I can't work, I don't have any health insurance. And since I don't have any health insurance, I can't go to the doctor and get a diagnosis so I can get disability. But to get disability, you have to have a diagnosis, which I can't get because I don't have a diagnosis. And to get a diagnosis, you have to have health insurance. And to get health insurance, you have to work, and I can't, because I'm disabled! All I could do was continue to appeal the disability denials.

By then, I was sick and completely without money. Every part of my body malfunctioned in some way. My hair was falling out, I got mysterious bruises, my body swelled up, my legs got cramps in them, my entire digestive system was problematic, my joints felt like they were going to dislocate, and I was always exhausted. I felt sick every single day from the moment I woke up. And I had no friends or family who could pay for the medical care I needed.

While I worked on disability appeals, I called and emailed every possible medical facility or organization that might help. I looked into every health clinic in the county, but they could not help. Clinics only take care of basic medical needs. Then I tried hospitals. Emory has a charity department, but it costs $800 up front. Grady Memorial Hospital has a Grady Care program, but you have to live in Fulton or DeKalb County. At the time, I lived in Gwinnett County. With no income, there was no way I could move to a qualifying county. Then I tried applying for Medicaid separately, and DFCS denied my application. Then I tried calling United Way, the Red Cross, and AllSup, a disability hotline. No one could help. I felt so helpless and stuck. Not even the governor of Georgia returned my phone calls.

Then, while all this was happening, my dad lost his house. I had to move back home, where the environment was unstable and unhealthy. I was sick, nearly bankrupt, and living back at home. It felt like nothing was ever going to improve, and I lost the will to live. I planned on overdosing on prescription painkillers, but I could not find any in the house.

Eventually, I pulled myself together. Then, I remembered that a college friend of mine lived in Fulton County. I hated to ask so much of her, but my health depended on it. So one day, I called her and told her about my situation. She agreed to let me move into her one-bedroom studio apartment, rent-free. After a two-month delay, I became a resident of Fulton County. I applied to the Grady Care program, and they accepted me with a 100% discount. It almost felt like winning the lottery.

My roommate and I had constant problems and bitter disagreements, but once again, I refused to give up. I couldn't bear to lose my Grady Care. On two separate occasions, the arguments got so bad that I had to move out with no money and nowhere to go. Meanwhile, for two years in Atlanta, I was a full-time patient at Grady. They performed test after test, but nothing provided any real answers. They never figured out what it was, but at least they discovered a few diseases that I don't have. It's not celiac disease, lupus, AIDS, chronic fatigue syndrome, fibromyalgia, psoriatic arthritis, and none of the other go-to diagnoses that doctors initially suspect. All they know is that I have intestinal ulcers, psoriasis, and vitiligo. Even collectively, these conditions do not account for all my symptoms. And just because my doctors don't have a diagnosis doesn't mean it's "all in my head," either.

But then, my roommate lost her job. We held on for another two months, but we eventually lost the apartment. I lost my Grady Care and almost had to move back home, to that same unstable, unhealthy environment.

Thankfully, my best friend and her husband agreed to take me in even though I have no money. They have two children themselves, and they're barely scraping by. But they know my circumstances, and they agreed to take me in. They were struggling before I arrived, and I'm sure the strain is worse now. I have moved three or four times in the past two years, and sometimes it feels like I am always borderline homeless. Sometimes I never know where I am going to be staying and for how long.

I was there for a year, and I spent the entire time trying to find some way for some organization to help me. I went to the hospital three times because I had had stomach pain so severe that it was making me violently ill. Some doctors tried to tell me I have gallstones, while other doctors told me I have no gallstones at all. It makes no sense. Just to be on the safe side, I ate an extremely bland and healthy diet, but it didn't work. I also spent that time emailing every government entity I could find, and only two people responded. One told me to call United Way, which I already tried, and the other contacted the Social Security Administration on my behalf. The SSA told them that they sent some appeal paperwork to my Atlanta address, and that I hadn't completed it by the deadline, so I'd have to file an appeal to continue my case. I submitted a 6-page appeal, and they closed my case anyway. I had to start all over again. And I did. So far, they have made little to no progress regarding my case.

Then, after months of frustration, misinformation, and calling, I found out that "ObamaCare" would not be able to help. The new laws used tax credits to reduce health care rates. I do not pay taxes because I cannot work. And thanks to my state's governor, Georgia did not participate in Medicaid expansion.

Then I found the Waycross Indigent Care program. I spent a solid 2 weeks scrambling to gather all the required documents. I submitted more than 30 pages of documentation and waited the required 4 to 6 weeks. At the end of that time, I called to get the status of my application. They denied me because "you already had all that testing done at Grady."

Some other futile, dead-end ideas I have tried are:

1. Adult Medically Needy Medicaid. This is the same exact program as Medicaid, and you do not qualify for either one unless you have disability.

2. Emergency Medical Assistance. You must apply for this each time you experience a medical emergency. If you are accepted into the program, you could get help with medical bills. I called, and they told me to apply for Adult Medically Needy Medicaid.

3. Emergency Medicaid. This program most often caters to non-citizens and is for emergency situations only. You must also submit pay stubs, utility bills, bank statements, etc., as documentation. I have no income, so I do not have these documents.

4. Mayo Clinic Charity Care. This program is only for people who already have a diagnosis and require specialty care that cannot get it anywhere else. It also costs uninsured patients $5,000 up front.

5. Writing letters to Dr. Phil, Ellen, Oprah, or any other television personality. I did that, and I never got an answer from anyone. Maybe my circumstances are not entertaining enough for TV.

6. Walking into any emergency room and insisting on treatment. ERs do not exist to diagnose long-term, complex, chronic illness. They are there to stabilize patients. They probably will not be able to diagnose those with mystery illnesses. I tried this, and I should have saved my money.

7. Temporary Assistance for Needy Families. I have no children, so I do not qualify. I have also used up all of my unemployment savings.

Nothing helps. I am so grateful for what I have, but this is all extremely frustrating. I have not had an income since 2008, and sometimes I wonder when I'll have to move next.

When my roommates found out that the Waycross Indigent Care program did not accept me, they could not hold on any longer. My best friend lost her job, and her husband was not working. They could not afford me anymore. I called my mother to see if I could move back home. That was after several weeks of discussing it with her and her agreeing to it. She said no. I had no home. I instantly burst into tears.

After scrambling to find somewhere to go, I called another college friend I hadn't spoken to in a while, and she and her husband agreed to take me in. They are very understanding and caring, and I am thankful for that. Now that I can rest easy knowing that I have somewhere to stay, I have focused on trying to get to the doctor.

It was then that I decided that it would be best to try to use what little life savings I have to pay for a month or two of health insurance on my own. It wasn't much, but it was all I had. Since the Mayo Clinic is not an option for me, I chose WellStar Hospital because they are a member of the Mayo Clinic Care Network. They only accept one type of health insurance that costs $260 a month. I purchased one month. This hospital is 2 1/2 hours away from where I now live. They also had very few openings, so I was only able to visit the doctor once during that month. She did basic blood work, but she wanted to do more. Unfortunately, I was unable to purchase a second month of health insurance. 

WellStar, however, was nice enough to let me know that they have a financial assistance program. I have applied, and it will be 6 to 8 weeks before I know anything. Even if they do accept me into the program, I do not know how much help I will receive. I need certain medications in order to eat comfortably.

My life wasn't supposed to be this way. I have brains, intelligence, and perseverance. I am so very determined, and I don't give up. I have hopes and dreams. I want to be an author or a journalist someday. But my illness has stepped on my dreams. I am 30 years old, and I can't work, drive, go to school, or socialize outside of the house. I publish an article online here and there on the side as my health allows, but I get paid one penny per page view. That amounts to about $20 every four months if I'm lucky.

And this is where I am today. I am still stuck. So I am asking you today to please help me. I want to get my diagnosis so that I can either get better and start working or stay sick forever and accept what that entails. I never wanted to be a part of this vicious cycle, but my life dealt me these cards anyway. It's not easy for me to ask for help, but sometimes, as is the case here, I have to. I have exhausted every other possible option. I'm afraid you might think I'm dramatic, boring, or insignificant. You might even inadvertently minimize my struggles, assuming I'm just depressed, I just need to exercise, or maybe I should just get out more. I assure you, none of those assumptions are true. I am not lazy, and I am not a mooch. Aside from a diagnosis and my health, I want nothing more than to be a productive member of society with a thriving career.

I need financial help. I haven't had an income since 2008. Even with health insurance, there are still copays. And travelling to specialized hospitals isn't cheap, either. And then there are the basic living expenses. I can't help the family I live with now. I can't help them pay for a single thing. I use electricity, one of the bedrooms, the water, etc., and I cannot help pay for any of it. Then there are basic toiletries for myself. I can barely afford those on my own. If it wasn't for birthdays and Christmas, there's no way I could scrape by. On top of that, I now have an estimated $6,000 in hospital bills. I cannot afford to pay off those bills.

Please help me. Please help me pay for medical expenses, living expenses, and past due medical bills. I don't even know how much I need, so I'm going to guess $10,000. Once I do get disability (or if I get a diagnosis, get better and start working again), if there is any donation money remaining, I will donate every last penny of it to the production team who is currently filming for a movie called "Undiagnosed: Medical Refugees." If they no longer need donations, any leftover money will go to In Need of Diagnosis. INoD is a non-profit organization that aims to help people like me, living with no diagnosis.

Thank you!