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Sunday, February 24, 2013

IC Can Make You Think You Are Crazy!

My theory was wrong.  I didn't have an UTI after all.  My urine culture came back negative.  So that means I had an unexplained fever for over 2 weeks.  I could chalk it up to a virus.  My Urologist suggested a CT scan to see if something else is going on.

I like the idea of a CT scan because my problems could be something other than Interstitial Cysitis (IC). Right??!!  I was thinking the same thing before I went to my Urologist.  It takes me over an hour to get to his office and I was thinking on the way.  How about taking IC away from the equation?  Then tell me what is wrong with me.  

As an IC patient I have been told that a lot of my symptoms  and or problems are related to my IC.  Although I do believe that most of my major problems are related to IC.  I am human and I had other problems before IC.

I like his thought process, that it could be something totally unrelated to IC.  He gave me the example of an eighty year old lady who had unexplained frequency and urgency.  He did a CT scan and found out that she had a kidney stone blocking one of her ureters.  Once removed, she did not have the problem anymore. Wow!  What an amazing story.

Although I have frequency and urgency, PAIN is my major problem.  I told him that I use my pain killers sparingly.  I told him that I have a lot of pain and want to take something, but I don't want to be addicted to anything.  I said "I feel like I am being tortured!!!  He said "I know IC can make you feel like you are crazy!"  Very well put, that pretty much sums it up for me!!  I can totally relate to that feeling right now!!!

Friday night I watched 20/20 "Robin Robert's Journey."  It described her battle with cancer.  As I watched it, I cried because I can relate to so much of her pain and her emotional struggles.  But I also longed for what she had, not the cancer, but the platform to raise awareness for her illness.  She was able to take time off from her job and return several months later without any problem.  There was a camera crew documenting her treatments and she had the support of millions of viewers.

A short clip from 20/20 Robin Robert's Journey

Are you thinking that IC must make you crazy?? For me to long to be going through what a cancer patient goes through is on the insane side.  Or is it??!!  I can't leave my job and expect to be able to return after several months.  I would have to find another job. I am going to a doctor,physical therapist or both at least once a week.  I am going through different kinds of treatments including bladder installations, bladder stretch and medications. The financial burden of the doctor visits and medications alone are almost too much to handle some days.

Currently I am back on Elmiron (the only oral medication approved by the FDA for the treatment of IC).  The first six weeks I was nauseated 24/7, but I had to just keep going.  Most days I would take a Zofran (which is what they give to chemo patients for nausea) and go to work and try to live a semi-normal life.

I wish I had a camera crew to document my journey, but I do not work for a major news show.  So I will just continue to reach as many people as I possibly can through my blog, my handouts and my personal testimony.

Robin went through some major pain and mental struggles.  She fought so many personal battles over the last year and she has overcome so much.  At one point, she almost died!! But she beat it and hopefully she is on a path to a complete recovery!

I am thankful she shared her story.  Her life reiterates the fact that it is good to have a positive attitude. She said "Being optimistic is like a muscle that gets stronger with use." I'm feeling that quote and I think I am going to start using that one more.  She also said when she looks in the mirror she sees a strong woman.

February 19th marked my one year anniversary for having IC.  Whoo Hoo!  I am frustrated that I am still fighting the battle with this chronic illness. I feel like I have come full circle.  I was very sick, then I was better, now most all my symptoms are back.  I am also determined to keep trying new treatments and to remain positive. 
I don't know where my IC journey will take me.  I do know if I trust God to guide me, then it will go where He needs me.  I would rather do something that I am not sure about and have His guidance than to do what I want and not be in His will.

"Trust in the Lord with all your heart,And lean not on your own understanding;In all your ways acknowledge Him,And He shall direct your paths."  Proverbs 3:5-6

Yes, IC can make you think you are crazy, but I will not let IC make me crazy.  I will keep trying new treatments, medicines, exercises and diets.  I will pray for Godly wisdom in my journey, so that I can try to make decisions based on God's plan for my life.  When I look in the mirror, I want to see a strong woman!

Don't let IC or anything make you think you are crazy. Concentrate on making yourself better. Keep a positive attitude and fight like a girl (or boy)!

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