For example - my kids had no school last friday - it was a 3 day weekend!!! Normally that would be yeah!!! Time for fun and games. But it ended up physically exhausting me and not allowing me to do it all! We began the day by going to Disneyland...the plan was only for a few hours. We were there under 3 hours and I was dragging the last hour for sure. Came home and was in bed for 3 hours that afternoon...only got out because my daughter had to be at her cheer practice and I was the only one around to drive her!
Saturday we stayed home and did a whole lot of nothing, hoping I would be recovered and we could do something fun sunday! Well - Sunday came and I had to cancel taking my kids to the local carnival because I just wasn't up to it!
This is the part of the disease that isn't talked about! It is the stuff in life that I, a 33 year old wife and mother of 2, miss out on! It is not fair! I know I need to stop complaining and just life what I can do! But - it really isn't fair. I don't feel like I am asking for too much. These 2 1/2 weeks of a downhill roller coaster ride are not fun! And now as I wait out the last week my concerns go towards what is this doing to my colon? I work so hard to keep it healthy. The Remicade helps to heal it....what is it doing now as I wait? How many times can my body be "ok" with this roller coaster ride before it stops dealing with it? I want to keep my colon!!!!
So now that I have ranted and raved....I'm choosing to end this with the good stuff happening right now! I'm not bleeding! I still can go out and function semi normally. I can eat solid food still (only in smaller portions). I'm home with my family everyday and not in a hospital. I have medical insurance that will pay for Remicade every 8 weeks! I have an amazing set of friends and family behind me willing to fight the fight along with me!
With all that said it really could be MUCH worse!!! I will take what I have been given and push ahead! But I still wish Blue Shield would listen a bit more to me!