Living With CU

10583679_1517632770.4949_funddescriptionMy name is Julie, I'm in my 20s, and in 2013 I developed a rare skin condition called Cholinergic Urticaria. It causes my skin to break out in painful, itchy, red hives if my skin temperature rises. I break out in hives if I do any physical exertion like exercising, or if I am outside in warm temperatures for more than five minutes, or if I use hot water on my skin, etc. Mostly hot weather and any sort of physical activity bring on hives. I live in Florida so I break out every time I go outside. Even stirring batter with a spoon while I am baking leads to my hand being covered in hives.

I have been fighting for disability benefits since 2013 when I was unable to continue my job at a gym. However, it is almost five years later and the disability courts in Florida still continue to deny approval for my claim for financial assistance due to my health conditions. Whether it is because Cholinergic Urticaria is a disease that is almost completely unheard of, or the fact that I am so young, I'm not sure, but the disability judges refuse to recognize Cholinergic Urticaria, and my resulting health conditions, as a handicap. And since it has been years of fighting and my inability to work, I am asking for help. I cannot afford to pay rent, pay my bills, buy food, or even go to the doctors. I am struggling and I do not have any other options. I am unbelievably grateful for the people at the churches here that volunteer to feed the homeless a free dinner every single day.

(UPDATE: As of January 2018, it has been almost one year for me now without a place to live. Which has also disrupted the process of my appeals. My days now consist of more suffering than I could have ever imagined.) 

Without health insurance I managed to acquire a substantial amount of medical/hospital bills. For years I went through savings, sold furniture, etc. anything I could do to avoid homelessness. But without an income, I could only survive on my own for so long. And as of 2017, I lost my apartment too. I had lived on my own for ten years and I was no longer able to keep a roof over my head. My mom who lives in NJ helped as much as she could, but she has no money left either now. My wonderful, kind hearted, mother, (who still works full time at an elementary school,) basically went through her retirement savings in order to try and help me.

We had no idea it was going to take this long. I was not approved to receive disability benefits for the last three times I applied, and it took over four years to continue those appeals. And now I am in the process of my fourth appeal, and I have literally lost everything I had worked so hard for. I had built a life for myself, I had been able to pay my own rent and bills for ten years, I had a career I loved, I had a life I loved. But now, five years later, I cannot even remember what it feels like to be happy. After having everything you loved, ripped away from you by a terrible illness, depression is almost a certainty.

In a perfect world, I no longer wish to be a burden. I want to be able to pay back my mother, get out of medical debt, get on disability benefits, and live in my own apartment, and have the means to replace my couch and table I was heartbroken to see go because I had worked and saved for years to afford.

As a twenty something year old, I had my whole life ahead of me five years ago. Now, I cannot keep my head above water. I had dreams and goals, and I was pursuing my passions of gymnastics and dance. I had made careers out of my interests. But with this disease, I can no longer dance or work out or perform gymnastics without breaking out in hives all over and having to immediately stop because of the burning pain. The ithching alone is enough to drive a person mad. As a result of losing everything, I became terribly depressed. I also have many other illnesses that are a direct result from this horrible disease. I feel like my life has just become one endless cycle of bad news.  

I will continue to apply for disability assistance and hope and pray for a miracle. With each year that passes, I lose much of the will I have to fight anymore and I just want to give up. But hopefully, somehow, some way I can come out of this on the other side. If I am ever approved for disability, I will have the satisfaction of deleting this GoFundMe page. The only reasons I began this effort, was to, 1.) create awareness for people with Cholinergic Urticaria, and 2.) to try and keep my place to live until I could receive some type of income. Being in medical debt is something I can live with, but not having a place to live is unbearable. I have no idea how many more years I will be fighting to be recognized as having a disability preventing me from working like I used to, but I have no other option than to continue to appeal and reapply over and over for benefits.

I am hoping to succeed in raising enough money here so that, until the time comes that I am able to receive an income again, I will be able to pay to have a place to live again. At the moment, I do not. I cannot tell you the agonizing pain of losing your home. And I am sorry for those who have gone through the same ordeal. But I promise you, I know I was meant for something more than this in this life. I have potential to be something great. And I am a good, caring, kind hearted person. So if you are one of these thoughtful, loving people that have donated to me, I promise you, you are investing in the future of someone who will always give back. No matter what challenges I face, I know that I will always continue to help people whenever I can. I just want you to know that in helping me, you truly are helping someone who deserves it.

I do not like asking for help, but in doing so, I have learned that there are so many people out there who care about me. And the joy that I have from gaining so many supporters is beyond words. Thank you everyone who has heard my story and reached out to me in some way. Whether it is a donation or an email telling me you are there for me, I want you all to know how much I appreciate each and every one of you. Thank you.

Also, you can see my photos, read my story, watch my videos, and learn more about CU at my website:

Thank you,


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Julie Reid 
Clearwater, FL
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