I am learning slowly all about intercystial cystitus. I had my pitty party last week. I was in horrible pain. At times as high as a 9 on the 1-10 scale. I have gotten myself down to a 2-3. How you may ask? And in such a short time? Well, I can say it was quite the adventure. First thing I did was call my doctor crying. She immediatly prescribed me elmiron a blood thinner and Urelle an oral antiseptic. I did a bunch of reading and found out that no one had told me to change my diet. So I cut out all caffiene, chocolate, citrus, multi vitamin, spices, vitamin c, etc. Un-benounced to me it is not a good idea to cut out caffience cold turkey when you drink 5-10 servings a day and are being prescribed two new high powered medications. The result was acute caffiene withdrawel on top of my already present IC pain. I couldn't get out of bed, I was dizzy, blurried vision, crying fits, headache, you name it. I thought I was dying. I was thisclose to having sean drive me to the hospital. But by Monday of this week the pain and the weird symptoms went away. I also got off the high powered meds after researching them on my own and consulting with my doctor, after finding out they only work in 50% of patients and have side effects like bleeding, bruising and hair loss. As hard as I worked with my PCOS and my hormones to get my hair to grow back the last thing I want to do is take a drug that makes it fall out. This week from hell really made me re-evaluate my life. 65% of people with IC do not work, and I don't want to be in that 65%. I am truly humbled. I have a new found appreciation for my job, my life, heck even my health insurance. I ordered two books on IC I plan on reading in the up coming weeks. Also I must note that many doctors believe that PCOS, IC and Endometriosis are all inter related. My goal is to find the most holistic, non invasive, treatment that I can find to manage these three conditions. ( Although I don't have a 100% diagnosis on the endo, my dr. is convinced I have it) So I need to learn about that too. As a patient you have to take ownership of your own medical treatment. Sometimes doctors will forget to tell you some or assume someone already told you, like in my case no one told me to change my diet and when I did after a week my pain went from a 9 to a 2-3. I can live with a 2-3 and give up coffee, even chocolate. Sometimes in life you have to sacrifice, and humble youself. You can sit around feeling sorry for yourself, but it doesn't change your reality, and in most cases only makes it worse.
Courage is not the lack of fear, but action in the face of fear. .........The goal is not to be pain free, but to manage the pain well enough to live a happy and fullfilling life.