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C.J.’s Story (Interstitial Cystitis, Sarcoidosis)

CJs Story IC and SarcoidosisMy name is C.J.  I have two autoimmune diseases.  The first one is called Interstitial Cystitis or IC.  It is a very painful bladder disease.  Some people are in so much pain that it is crippling.  There is currently only one FDA approved drug specifically for IC.  It is very expensive, and in a lot of cases it is not covered by insurance.  I was diagnosed with IC in August of 2013.  It sometimes can take years to get a proper diagnosis.  I was lucky to get mine after only three months.  I currently take six different medications to control all of the symptoms I’m experiencing.

Plus, I have another autoimmune disease called Sarcoidosis.  Sarcoidosis (sar-koy-DO-sis) is a disease of unknown cause that leads to inflammation. This disease affects your body’s organs. Normally, your immune system defends your body against foreign or harmful substances. For example, it sends special cells to protect organs that are in danger.  These cells release chemicals that recruit other cells to isolate and destroy the harmful substance. Inflammation occurs during this process. Once the harmful substance is gone, the cells and the inflammation go away.  In people who have sarcoidosis, the inflammation doesn’t go away. Instead, some of the immune system cells cluster to form lumps called granulomas (gran-yu-LO-mas) in various organs in your body.  I suffer from pulmonary and lymph node Sarcoidosis.  My case is severe.  It took two years to get a proper diagnosis.  I ended up needing to be on oxygen 24/7.  I have been on oxygen since September 20, 2013.  I had an open lung biopsy to get the diagnosis.  My lungs were so bad that I had to be kept on a ventilator for a prolonged period, and I was in the ICU.  So far I have not responded to any of the medications they’ve tried.  I am currently in need of a lung transplant.  Unfortunately, I’ve been denied the opportunity to even be placed on the transplant list due to the severity of my condition.  They frankly don’t think I’d survive such an operation.  So they are trying a new medication regimen.  I take oral chemo once a week, and I also get infusions every 6 weeks now.  I take a total of about 35 pills a day, plus I’m on the oxygen 24/7.  I have been fighting now for three years, and I plan to beat this.

C.J.
Wisconsin
Submitted 09/01/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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4 comments

  1. I am proud to be able to call CJ a friend – albeit a Facebook friend as I am from the UK. I also have Sarcoidosis in the much earlier stages. CJ is an inspiration to so many people on Facebook, despite the severity of her illness she always shows concern and compassion for others and gives us all daily encouragement to stay strong and to fight – You keep on fighting like a girl CJ 🙂

  2. C.j. you are an inspiration to so many. Your courage and strength is remarkable. I’m very lucky to have you as a friend. You are always here for me. Thanks for all your support. Keep fighting like a girl and kick Sarcoidosis and Interstitial Cystitis butts! Love you girl. Hugs.

  3. CJ, my heart goes out to you as I read all you are fighting. I admire your strength and courage. Please know from a fellow sarkie, that I am sending you positive vibes and many prayers as you take your new normal a day at a time. Sometimes we do not think we have the strength to even make it an hour at a time. You are brave, you are strong and you are not alone!

    Thank you for sharing your story! Kim

  4. Noelle Hartman Thomsen

    Dearest C.J.,
    As you will hear this often, I too am so proud and thankful to call you my sister. What you have been through is beyond my comprehension. I thought I knew some strong ladies out there, but you take the cake!! You have been so supportive and loving to me since the first day I met you. Always worrying about me and what I’m doing. You truly are an inspiration and I thank you for that. I love you and will always be here for you no matter what. Hugs!!! Xoxoxo ??????????

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