I will be celebrating my 50th birthday in the year 2008. I have realized that I have spent my entire adult life battling Crohn’s Disease and have spent most of that time expecting to wake up tomorrow and feel better. Lately, It has come to my attention, that it’s not going to happen. I must live with Crohn’s Disease.
It is very hard, if not impossible to put into words, the deep urge I now feel to get my story out there. One day I awoke with this deep passion to speak out. I have tried to come up with different methods to gain awareness. I can’t explain why I suddenly feel this compulsion. I have spent most of my life trying to hide my disorder and fit in “normal society”. I have really struggled through the last few years and feel cut off. I have been isolating my self because I can no longer keep up the façade of normalcy. My ‘flaws’ are showing and have become major obstacles; physically as well as emotionally.
I have experienced so much in the last 32 years. When my journey began, Crohn’s Disease was unheard of and I did not fit within the profile of a true Crohn’s patient. I had to validate every step along the way. Always having to convince someone that I was really ill, really in pain. With this disease, comes much loneliness. It has been my experience, that most people don’t understand what it is like to live a life dictated by your disease. Most times, they don’t want to take the time to understand, they simply write you off. They reduce your struggles to an easy excuse to get out of an engagement. No one wants to believe that someone could be in severe pain, most of the time.
Despite the limitations imposed by this terrible disease, I was able to complete junior college, find a full-time job, find and marry the most wonderful man. We have been together 24 years. During this time, we have faced many of the same obstacles, time and time again. It wasn’t until recently that I was able to find good medical care that validates my condition and therefore, me, but it took me 31 years to find it. 31 years of rejection and living a life having to prove I was ill or apologize because I was.
Currently 3 x per day 1000mgs Pentasa, Entocort (3mgs), Prilosec, multi vitamin, biotin, Lortab, Librax (for spasms) & VSL#3 (for probiotics) or activia yogurt.
Preparing to start Remicade because I am steroid dependent now.