Lupus

Introduction of myself:

Hello, My name is Jokiva and I am 22 years old. Born and raised in New Orleans ,LA. I was diagnosed with this condition at 18 years old. My symptoms were a rash on my arm and joint pain. Blood work was ran and i was diagnosed with lupus. The rash can often be mistaken for eczema. A few months later i was admitted in the hospital due to Lupus Nephritis. That is when your kidneys are leaking protein. During this time I was having real bad trouble with walking, eating ,and breathing. When i was in the bed i would sweat and my body imprint would be in the bed. i guess my body was trying to sweat out the infection. Then i was incompetent of holding any bowl movement or Urine. I would take steaming hot  baths. My face was completely swollen to where i could not open my eyes. They put me on Cellcept to control my kidneys. As well as other medications. This was in 2013. For a Few months my lupus went into remission. So, i felt like why not stop taking my meds. Wrong!

A year later, I started throwing up every single day. I begin to vomit blood. My lupus had then attacked my intestines , Stomach, And pancreas. By this time i was off Cellcept and put on Immuran. I was admitted in the hospital once again where and endoscopy was performed and i was diagnosed with gastritis. I was put on Antibiotics. Then it calmed down for a while. Randomly one day i went back to the hospital for a sharp pain on my side everytime i tried to breath. I was admitted and diagnosed with a blood clot on my right lung. I ended up in the hospital 3 times so far for it. One time i had pneumonia around the blood clot. I was put on Xeralto. but While i was in the hospital my kidneys ended up being inflammed and leaking protein once again. I started to feel like me and my husband were living in the hospital. i would be in the hospital almost every other day or every other month. 

As of currently they are trying to start me on a form of chemotherapy called Rutuxin. Hopefully that will help my lupus go into remission. While i try the chemo i still have to take all my other pills which is about 14 pills a day. im just taking it day by day and hoping that one day this condition can be controlled better and properly. This has alot of setbacks in  my life. I cant work, i had to take a semester off from school because i kept missing too many days. It effects every function of life. We are also sensative to sunlight so everytime we go outside we need sunscreen and a hat. I cant eat certain foods, Sometimes i make plans and it does not work out because i get very sick. So lupus is not an easy disease to live with.

Donations

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  • Anonymous 
    • $5 
    • 33 mos
  • Teresa Nohpal 
    • $20 
    • 43 mos
  • Lauren Auten 
    • $180 
    • 43 mos
  • Natasha Hudson 
    • $20 
    • 44 mos
  • Anonymous 
    • $40 
    • 44 mos
See all

Organizer

Jokiva Rivers 
Organizer
Westwego, LA
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