Okay, so several posts in and I finally feel like I’ve shared a majority of my story. Have I skipped many things? Absolutely. These things will certainly come up in later posts. I have decided I need this outlet. I actually slept after the first night I posted. People in my life would be tired of hearing me complain so I just don’t. I smile and get through the day even when I wish that Crohn’s would just kill me quickly. Sometimes I wonder what I did to deserve such a painful and miserable existence. I hear people tell others to be thankful for each day given and I wonder if that is even legitimate. I often weigh the pro’s and con’s of living. I am here for my family but how much are they missing out on because I can’t go or eat the things they can. At times, my children help gather things I need or complete chores that I am unable. What a rotten way to spend teenage years.
Anyway, my daughter drove me to my first infusion. Several things had happened that morning that made me question whether or not I had made the right decision. My medication was lost initially. Once it was found, it was discovered that it had not even been delivered yet. After hours of phone calls, I was ready for my infusion. Almost ready. I was dehydrated. Of course, I was dehydrated. I am either vomiting or I had diarrhea a majority of my day. Every day. So, fluids first and medication later. Not even half way in to the first infusion I had a blinding headache. Light sensitivity, nausea, and neck pain were nearly unbearable. I knew the infusion was only 30 minutes long so I decided to use meditation to get through it. The nurse monitoring me noticed my skin was very pale. She expressed how serious it was to report side effects so I did and the infusion was stopped. I was so frustrated and thankful at the same time. She was looking out for my health but I just want my medicine to see if this is it. I want this to be my miracle medicine so badly. Eventually, the medication is restarted. I was again asked about side effects and I may have told her I was feeling amazing. She actually laughed and said she knew better but completely understood. After my first infusion was complete, I had to stay at least an hour for observation. My teenage daughter was ready to climb walls. She agreed to drive me but did not realize that this could be an all day event. It had been nearly seven hours and she was irritable. She drove me home and didn’t say much. When we got to the driveway she asked why I lied and told the nurse I was feeling amazing. Ugh.
Teaching my kids to be honest has always been a priority. There have been times I would have loved to lie because it would have been beneficial in some way but I did not. Telling the truth in my household is just the way things are. No matter what is said, there is a mutual understanding that it is coming from a place of love. It is everything in our household. I found myself admitting that Crohn’s is a beast and while I am very happy with a majority of the things in my life, Crohn’s is like a sick and twisted torture treatment that can suck the joy out of any event without any notice or reason. While I initially believed that this was information a teenager not be concerned with, I have since decided that it is important for me to stop hiding my bad days.