Living with chronic illness

I write this post from the perspective of someone who has been blessed with good health for more than six years. I am extremely grateful for the research and discoveries of the last ten years which have made it possible for me to live a normal, active life with Crohn's Disease. My last post I talked about venting and how difficult it was to try and balance a very busy schedule with my need to get Remicade and how a mishap with receiving my medication put me in a vulnerable position. I was feeling considerable discomfort and fatigue because I got off my eight-week routine, and also the mental and emotional anxiety of knowing what happens if I get out of remission. I was feeling the stress of my work and my family and the stress of knowing that being stressed contributes to getting out of remission.

Last Sunday I had probably the best run of my life. I felt so good. Monty (my golden retriever training buddy) and I hit the road near my home on a beautiful (finally) sunny day and we just ran and ran. I made it six miles in 63 minutes...not only a great time for me, but a great validation that what I am doing in trying to get ready for this half marathon in July is working! I felt like I could have even gone further. I didn't hurt. I didn't feel any stress or anxiety. I felt warm sunshine, God's love, the strength of my resolve and the pride of my family.

Tuesday I was in near panic attack mode when I received a call that my remicade was again being delayed. All the joy and the hope I felt went right out the door in about two seconds. I knew I needed my medicine. I need to travel to another town to get my infusion and between the travel and the infusion itself, I need a full day off. I had the day booked. I needed my infusion!

The issue got resolved and my medication arrived. Wednesday I received my infusion. I had to step back from the training program just a bit as the infusion leaves me pretty exhausted. I took the day off and got some rest in the evening. THursday and Friday I had a big meeting at work that went off without a hitch. I love working with the group and always feel refreshed just being in their midst. By Friday afternoon, I was back on track feeling like everything was going to be okay.

This is kind of the roller coaster of chronic illness. On the one hand, the reality is that certain care is necessary; every day there must be an awareness and a recognition, a level of respect given to the disease to do everything possible to stay in remission, and even then there is a chance that you won't....yet every day, one must fight to not let the disease take over what matters. It is a tight rope act and sometimes I slip. But the key is to get back up and get going.

I am absolutely convinced that Remicade and my other medications - 6MP and prevacid, as well as the exercise, the knowledge and support of CCFA and my doctor - Tim Johnson and his nurse Kim , have given me my life back. Because of the research that has been done and is ongoing, I can work full-time and referree my daughters soccers games and play football with my son. I can train honestly for a half marathon! There was a day when walking to the restroom was a chore. The first 5K I ran after my surgeries will always be one of my life's greatest accomplishments.

Because of the research and the tireless efforts of scientists working to discover better ways for treating Crohns and colitis and ultimately finding a cure, my son Dylan, who has still not been diagnosed, but definitley has GI complications, may not need to deal with hospitalizations and consequences including isolation from peers, financial instability and inability to work. My brother Kody will be able to reclaim his life - his ability to hold down a career he loves and play with his daughters. I may never again have to worry that a bumbled prescription delivery could put me in the hospital.

I am asking for your help, again, to fund this research. Please log on to my funding page and give generously. I know that money is tight for everyone, but I also know that this is a way to truly make a difference. At least 80% of on the dollar will go to this research and will put us one day closer to a cure. Every penny counts.

Thanks
jd