Posted by CrazyRedders on February 2, 2018

What autoimmune disease are you struggling with?? Do you have good doctors? Do you have a good support system?

I got diagnosed with a rare tumor in my eye almost 3 years ago.The name of this tumor is “Orbital pseudo-tumor”. I was told that this tumor was caused by an autoimmune disease. They have yet to find out which autoimmune disease caused it. I will have it for the rest of my life. They think there is one in my other eye now too. The good news is that it’s not cancerous and it’s finally in remission now!It took a long time to put it in remission.

I had to do 1000 mg of Prednisone daily and 1000 mg of steroids through an IV 3 times a week. I also had to do cancer treatments of Rituximab. I can’t stand my doctors! I’m just going be honest, they’re assholes! Sometimes I don’t think they know what the hell they’re doing. I felt like a celebrity when I had to stay in the hospital because not many people have heard of this tumor, and so many doctors from all over came to see and talk with me. I had to keep telling my story over and over to each of them. It was exhausting!

Even though the tumor/tumors are in remission, I still struggle everyday with the horrible symptoms. The doctors say, that I will have to deal with all the horrible symptoms for the rest of my life. They said, it’s just a part of the disease. I am blessed though! I have a wonderful support system and the tumors are not cancerous! I hope and pray they find out what autoimmune disease I have….

Do you suffer from and autoimmune disease? I would love to hear your story too.


  • Old Jules says:

    I’ve searched endlessly for a disease that doesn’t suck. But in answer to your question, I had a sudden onset of something nobody ever heard of called, guillain-barre syndrome. Paralysis began in my feet and worked upward over a few days. I went to the emergency room when I couldn’t stand up anymore. Spent about a month in the hospital on a dialysis machine getting all my wossname something-or-other replaced so’s to shut down my immune system and stop the advance of the paralysis. Then a few months in physical therapy learning to do things again.

    Everything else being equal I’d just as soon not get it again. Mostly people don’t. But I never cared much for hernias, heart attacks, esophageal reflux disease, shingles, pneumonia, cancer, benign brain tumor, hemorrhoids, or the Egyptian Ducksquirts, either.

    • CrazyRedders says:

      I agree they all suck! Surprisingly I’ve heard of guillain-barre syndrome. It is very rare. I’m so sorry for what you have and had to go through because of this disease. My thoughts and prayers are with you:) thank you so much for sharing

  • exoticnita54 says:

    Oooh nooo… so sorry 😐 you’ve to be tolerant of these symptoms..
    I guess we all have something different to live with…

    • CrazyRedders says:

      It’s ok:) it stinks but I consider myself to be blessed. Things could be worse. We all definitely do have something different that we’re dealing with. I’m hoping my story inspires others to share their stories. I Want everyone to know that they are not alone. Maybe the stories will help others going through the same thing.

      • exoticnita54 says:


        It’s just a part of life.

        Any two illnesses are never the same.. but.. we all go through the same feelings..

        And we just have to learn to accept and endure it the best way we can..

        Thanks for sharing though..
        it’s makes the awareness of such known.. and give us knowledge and understanding of it..
        hearing from someone personal experience..

  • I’m sorry this has befallen you. Thank you for your good spirits.

    I have nominated you for an award. Thank you for allowing me to get to know you on this platform.

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