My name is Julie, I'm 28, female, and live in Clearwater, Florida, USA. And Cholinergic Urticaria has destroyed my life completely. I developed it exactly 3 years ago, in March 2013. After 3 years of physical and mental torture, pain, stress, anguish, heartache, no income, no help, no support, and no cure, I'm not sure how much more a person is expected to suffer daily like this. I've lost everything. I can't take it anymore and I'm begging for help. I've lost everything. Please.
I've lived in Florida for eight and a half years now. Three years ago, in March 2013, I was working at a gymnastics gym for my fourth year in a row, and I was also a dance teacher. And I loved my life. And out of nowhere, I developed a rare skin condition called Cholinergic Urticaria. I am allergic to my own sweat. (And tears.) Me, out of all people. Someone who was so physically active everyday. And loved being out in the sun. I had to quit my jobs; my passions. And having my passions just stripped from me out of the blue one day, along with my whole life as I knew it, I cannot describe to you the depths of depression that exist when your life is just, taken from you. And you may think, 'oh big deal' but you dont realize how much your body sweats until you become allergic to it. I would say its one step shy of being allergic to breathing or blinking! Bodily functions you have no control over. And to add insult to injury, when you get sick, you find out who your true friends are. And that turned out to be nobody, sadly. People tell me to move up North, hah! As if that would make a difference. I get hives trying to shower. I break out if I even try to vacuum, in air conditioning! And the hives have gotten worse with each passing year. I've had times where 100% of my body is covered in painful itchy hives. It is very hard to find any doctor who has even heard of CU. And I have no medical insurance, so it's usually anywhere from $200 to $350 (US dollars) to make a new patient appointment. And every medication, lotion, or remedy I've found online, does absolutely nothing to treat it. When I try to find answers online it usually just says, "there has been very little research on CU since it is such a rare condition." And for two and a half years now, I have applied for government, social security disability benefits/assistance, and I have been denied each time. Justice for all, right? I guess not. The judge stated that, "This does not affect my daily life." Are you kidding me? This has DESTROYED my life! It has destroyed me too. I stopped living three years ago. Our judicial system in the US is so blind if they cannot see how obvious it is, that someone with CU is unable to perform daily tasks like a healthy person can, or work a normal job. Though I continue to be denied for my legal right for help? Isn't this why the Americans with Disabilities Act was established? To help people like me, who have worked hard my entire life since the day I was legally able to? That's ten years of my life that I have put in hard work wherever I was employed. And I'm a perfectionist so I really did work myself to the bone at every job I ever had, even though I received such little in return for my efforts. I know ten years is not a very long time, but I have no control over when I developed my disabilities. Yes, I have more illnesses than just CU and it's an everyday struggle. Especially because nobody has ever reached out a hand to help me. Even though I am now facing homelessness. I am outraged at our legal system here in the US, which is why I have turned to the internet now for help. When I went to trial to fight for my disability income rights, I was forced to go without representation, and was denied. I didn't know that I had any other option at the time because the judge said that they will not reschedule a new trial. So I feel I was taken advantage, because I was told I could either proceed without a lawyer, or simply be denied. And I had been waiting years for this court date, and both my lawyers didn't bother to show up. Not a single person in that courtroom told me there was any other option other than waiving my right to an attorney in order to proceed with the trial. But, now that I spoke to a real, legit lawyer, I am well aware how unfairly I was treated in my trial process. Because in the US, it is a Constitutional right that you are guaranteed representation for any trial. I also wasn't allowed to submit pictures. In fact, I couldn't even go up to the judge and show him my arms covered in hives, because he wasn't even in the room! He was on a screen via skype! And the only medical records they obtained were from the free clinic, (which is a joke) that contained so much false information that it sent me into a panic attack! (For example, it said I went back to work, I never went back to work!) I have not worked in three years because it is physically impossible for me. I wake up covered in hives everyday, even though I have the air conditioner on. I have layed in bed for the last three years straight to avoid sweating, and it breaks my heart every single day. I miss my old life so much. One without itching and without pain. I even dream about it. But when I wake up, only then does it turn into a nightmare. To know that my life will never be rhe same again. These everyday hives are so unbearable that I scratch my skin open and still continue to scratch because it just itches so bad. And after laying in bed all day everyday for 3 years now, I can barely stand or walk for more than a minute or two. My back has just given out. Especially since I went from being 100lbs to 200lbs from being almost completely immobile, unable to exercise, and so severely depressed that I cope with food. There is also added anxiety due to a number of things, one being that an allergist believes I can go into anaphylactic shock at any moment and die. But I can't afford an epi-pen. It saddens me so much to think about my life 3 years ago, compared to what Ive become now. Im unrecognizable. So I also developed Agoraphobia. Which means I almost never leave my apartment. Only for doctor appointments. Because when I see myself in store glass windows or doors, I can't even believe it's me. And people can be so cruel. People have made horrible comments about my weight gain, and it makes me feel worthless. And people have physically moved away from me in the store because they think I have some kind of contagious rash. It makes me feel like I'm some kind of monster. I went from being an outgoing, friendly, happy person, to someone who, has cried everyday for three years, has no friends or family, and never leaves my apartment. No man wants me once I tell them about my CU. It's like I'm damaged goods. I went from being a gymnast and a dancer, to not being able to walk through the grocery store, during the day, without receiving hurtful stares. It is just as emotionally painful as it is physically. I am a great person, and in this shallow, media infused society that we live in, we are judged by our looks. No matter how amazing of a person we might be. I am screaming out for help and no one even bats an eyelash. At least if I was approved for disability assistance I could stop eating free meals at the churches and wouldn't be facing homelessness. I am scared to death of what is going to happen to me because of that fact that I cannot work and therefore cannot afford the cost of living. And the thought of living on the streets of Florida in 100+F temperatures, just makes me start to panick. Just imagining how severe my hives would get, I would probably die. But which one sounds better to you? Death or living in Hell everyday? Im not suicidal, but just how much is a person supposed to take living like this everyday? I'm at my three year mark, and I'm at my breaking point both mentally and physically. Can anyone help me?
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