What is normal? What is a normal life or what does it feel like to have a normal functioning GI tract? I had a conversation the other day with a coworker that I will discuss further in the blog that made me think about what is normal for someone with IBD? Normal for me is waking up nauseous, going to the bathroom multiple times a day and praying I don’t vomit any during the day ( I hate vomiting.) Normal is worrying about where the bathrooms are, or will I be able to make it to work every day or school and to be able to do things for and with my wife that day. So, what is normal to you? Here is the story.
I luckily have been able to hold a steady job and be in school while having Crohn’s Disease unlike many people and I do not take it lightly as I have seen how bad it gets and my friends with Crohn’s who are not able to work. I want to give you guys a little background on me before I tell you a story. As some of you know I am 22 years old, I am married to a beautiful woman who loves me unconditionally and in spite of my illness, I am in college studying Biology and I plan on getting a Ph.D in Immunology to study IBD. I mentioned I have crohn’s and I have had 10 surgeries since 2007, 3 of those surgeries took place in 2012 I had both of my hips totally replaced at the age of 20 due to OsteoNecrosis from prednisone use. Now to my story I want to tell you all.
I had a conversation with someone I work with the other day that was a little frustrating to me and it goes to show you how little people really know about IBD. It happened to be one of my coworkers at the time and we were talking about work and I had mentioned I was really tired that day, and what he did not know was I have been flaring for a while now and the fatigue was pretty rough that day and I also work in a restaurant waiting tables so I am on my feet that day and I was working a double. The coworker is a little older than me and is married. I was talking about how tired I was and had some school stuff I needed to do and he goes on to say that he “Lived my life, and knows all about what I am going through” referring to working full time, being married and going to school. He knows a little about me about that I am sick and have Crohn’s and when he was done talking I politely said “You haven’t really lived my life, if you had you wouldn’t be having this conversation with me.” I saw this as an opportunity to enlighten someone on how it really is to live with IBD because he got rude with me during his conversation. So I preceded to tell him in a nice way that yes he has lived a portion of my life but when you add in having IBD, being hospitalized at least 4 times a year, multiple hospital visits, medical bills, having double hip replacements, getting a 4 year bachelors degree, being married, working full time and the hundred more issues that come up every day then you actually have no idea. He gave a little laugh and you could tell was humbled by the experience but that was not even my point. I wasn’t looking for sympathy, for those of you who know me I honestly do my best to not complain (other than to my wife, lol.)
My point is that people have no clue what we as IBD sufferers go through on a daily basis and have no clue what IBD even is. The point of doing all of the activist work that we do and getting information out to people about IBD is so they will know it is not just an easy disease to live with. We make sacrifices every day, we do the best we can to get by and we try to do it with a smile. Its a struggle to get up out of bed every day but we do it. We take medicines that destroy our bodies just so we can keep our illness in check and hopefully get into remission. We spend a lot of time in the bathroom and a lot of time at the doctors office or in the hospital.
My goal in life is to get to where I want to be in spite of my illness and struggles, for people not to see me as someone who has a disease but a regular person who conquers that disease and has achieved great things in life. BUT it is also important to me that people are aware of the illness that I and millions of other are suffering from so that there can be better advancements in treatment, care and hopefully one day a cure.
You can check out my facebook page www.facebook.com/ItTakesGuts and on twiiter @AaronBlockerIBD or email at LifeTakesGuts@yahoo.com