Newly Diagnosed

      Welcome to my blog.  Last week I was diagnosed as having interstitial cystitis or IC.  Upon my research of the past week I have found so many different blogs/chats/boards that show how horrible IC is.  I even had people telling me to keep up with everything so I could file for disability now and get my handicap parking quickly.  I was beginning to get down about it all.  Then today I met with my Physical Therapist.  She changed my way of thinking.  She reminded me that I'm going to have good days, bad days, and in-between days.  She said "Don't believe everything you read."  I realized she was right.  Then at lunch with a friend of mine who has another disease that can be very debilitating she mentioned that she wanted to put a blog together for her good days. I will give her complete credit for this idea.  I never would have really considered making it public if it had not been for that.  I decided that it would be good for other people to see the journey from the start for someone and follow along.  While I do not know what is ahead of me I do know that I'm not one to let this control me any longer.  So welcome to my journey.

     I guess now it would be good to tell you how it all got started and a little about me.  My name is Lillian, but everyone just calls me Lilly.  I'm a 29yr old female, married to the love of my life Dennis for 10years, and I have 2 boys who are elementary age.  I will be the first to admit I'm not a small woman.  I was 95lbs when I got married, but unfortunately I let myself go. Nobody is to blame but me for that.  My goal is to get down to a healthy weight again, but that is going to come with time and hard work.  I am also a full time student with Ashford University (woohoo Criminal Justice major), Cub Scout Den Leader, and a Director with Pure Romance (Proud of this, but it also has something to do with my story).  

  ME

     Like I mentioned prior, I got diagnosed last week. It pretty much all started early this year.  I was in bits of pain here and there, but blew it off as PMS.  Then in June I landed myself in the ER.  The pain I was in was crazy.  I thought it was my appendix.  The hospital told me it sounded like it was early onset of appendix issues and I needed to see my PCM.  The problem with that is my PCM would not get me in till AUGUST (yes you read that right...2month wait).  So, 2 nights later I end up in the ER at another hospital.  They told me it was not my appendix and it was return of my endometriosis (pain during intimacy, around my menstrual cycle, and other times).  After a long wait (2months) to get to my PCM he gives me the referral to the OBGYN in his group telling me that I'll likely have a hysterectomy.  I went to Pure Romance World Conference and Patty Brisben (our founder) was shocked when I mentioned it (IDK why I did...lol) and said "I hope you have a really good doctor."  At the time I was on Tricare and had no choice over who I saw, so I didn't.  I had a jerk.  He told me I would need a hysterectomy, but since I had 3 abdominal surgeries (gallbladder and female issues 2x) he would not do it.  I asked to be sent somewhere else for further help.  My sponsor told me to take charge of my health care like Patty always told us.  He sends me to my current doctors office.  I am now seeing a urogynecologist.  The entire staff has specialties with Women's Sexual Health.  It was exactly who I needed to be with.  It was that "good doctor" Patty told me to search for.  The crew there expects IC, but wants to make sure that I'm not having other issues also.  We set up surgery, bladder cam, and Physical therapy.  Turns out a lot of my pain was appendix, but there was no endo.  The bladder cam showed why I had a majority of the pain though.  I have IC.  

     IC is a chronic condition characterized by a combination of uncomfortable bladder pressure, bladder pain and sometimes pain in your pelvis, which can range from mild burning or discomfort to severe pain.  For those saying "oh a bad case of bladder infection" oh so not close.  If you have ever had a cold sore on your lip or inside of your mouth and have eaten something acidic, salty or anything of the sort and felt that pain you are just experiencing the beginning.  Imagine a bunch of little cuts/sores all over your bladder.  Then as your bladder fills with urine (acidic/spice/etc filled) it gets into all those little cuts/sores.  Imagine that pain.  It's not exactly the best feeling in the world.  So, imagine being told that you are going to have to deal with this with only a 50% chance of it clearing up eventually.  Yeah...super right....LOL.

     Well, I have decided that I'm not going to let that get me down.  I'm going to take my Elmiron as prescribed, and continue on with my daily life.  I'm not going to let the bad days overcome the good.  I've got 2 amazing kids I want to be out running around camping with.  I have a wonderful husband who I enjoy spending time fishing, shopping, gaming with.  I have a career with Pure Romance that I love.  I'm going to share my good, my bad, and my ok.  I hope to be an inspiration to look at the good not just the bad!!!  Again WELCOME.  Sorry this first post was so long.