I have to confess to you, readers: I’m struggling with this whole I-have-a-chronic-condition thing. When I last wrote about my ulcerative colitis, I was about to start a new medication, an injectable drug called Humira. I have now been giving myself shots every other week for 8 weeks. The first time I had to get the injection, I went into the doctor’s office, where two nurses taught me how to give myself the shots. That first round was 4 shots, and it was traumatic. I cried, and I had to take a break between each shot to compose myself. The medicine burns when it is going into my body, and even though I had read about this, I still was shocked by how much it burned. Fortunately, the burning doesn’t last long (maybe 10 seconds or so), but that first day I sat in my car afterwards and just sobbed. My stomach was tender from the shots because two injection sites had a slight reaction and became red and irritated (though only temporarily), and I was emotionally spent. The Lord was so good to comfort me, though, and since then I have done fairly well with the shots. They are a routine to me now, something I don’t have to think too much about.
What I am struggling with is the fact that the medicine does not seem to be working. I have really noticed no change in my symptoms since starting Humira, and I am feeling very discouraged. I am still taking prednisone and asacol along with the Humira, but the whole point of taking Humira is to get me into remission and off of those other medications. I am so thankful that I am now on the lowest dose of prednisone so the side effects are not nearly as bad as they once were, but in general it’s not a good medicine to take long term, and the sooner I can stop taking it, the better. My GI doctor said it can take 6 to 8 weeks for the Humira to start working, and I am at the 8 week mark right now. I go back to the doctor on February 28, so I will see what he says then if the medicine still doesn’t seem to be making any difference.
The truth is, I would love to wake up tomorrow and not have any more diarrhea. That is what I pray for. I want to feel normal again, but the truth is I don’t know if I will feel normal again. I don’t know if this is just a new normal I have to adjust to, if this is as good as it gets. And to be honest, how I am right now is, for the most part, bearable. Though I still have diarrhea 3-5 times a day, I feel ten times better than I did when I was in the hospital, and for that I am grateful. I have an incredibly understanding boss who has been more than supportive, and when I had to miss work on Tuesday because I was up in the night and felt horrible most of the day, he told me to take all the time I needed. The Lord has provided me for me in many ways, and there are still days where I am overwhelmed by His love and His kindness towards me. I have to guard myself against feeling sorry for myself or complaining because I really have been given so much.
The difficult part of this condition is its unpredictable nature. I have developed a good deal of anxiety about being somewhere and needing to use the restroom and not being able to find one. I feel embarrassed when people ask me how I am doing because I don’t know how to respond since the truth is I am sick of going to the bathroom so much, and who wants to hear that? I hate the fact that there will be times/have already been times when a family outing is interrupted by the fact that I need to find a bathroom and find it quickly.
I have wrestled with whether or not to write this post. It’s not pleasant. It’s not something people really talk about. But I have also realized that staying silent doesn’t help me. Staying silent makes me feel isolated and alone, and I know I am not. On Tuesday night I shared with a group of women from my church much of what I have been struggling with, and even though I felt slightly humiliated to be talking about something like poop at a prayer meeting, the way they prayed for me and loved me was just what I needed. The peace of Christ came over me as they prayed, and I was reminded anew that this is what the body of Christ is for–to lift up and encourage one another and magnify the Lord together. I wasn’t the only woman in that room hurting. I wasn’t the only one in need of prayer. We all need prayer, but if we don’t open ourselves up to being vulnerable, we miss out on the beauty of community.
One of the biggest blessings I have seen come out of this whole experience has been the sense of community I have experienced among my church family, and if I had kept quiet about everything going on, I would have missed out on that community. I had to go through a terrible experience so I could see what was right in front of me all along, but as one woman said before we left that night, “How can we help bear each others’ burdens if there are no burdens to bear?” How can we help each other if we don’t know the needs?
Suffering is a guarantee in this life, and while we often can’t control what happens to us, we can always control our response. We can choose self-pity, or we can do what James 1 urges believers to do and “count it all joy.” We can choose isolation, or we can choose community. We can choose anxiety, or we can choose prayer. I am striving every day to make the right choices, and by God’s grace, I will do so. I take comfort daily in the fact that God does not waste my pain, nor does He waste yours. He is using it to mold me into His likeness, to make me like Jesus. I take comfort in the fact that though all my prayers may not be answered in the way that I hope, no prayer is ever wasted. Every prayer brings me before the throne, closer to my Father, and further from my sin. When I feel defeated and tempted to despair, I must remind myself that I do not have a God who is unable to sympathize with my weaknesses. I must remind myself that I have a God who knows me, who knows ALL, and who has never been proven unfaithful. I may stay silent about certain things, but I certainly can’t stay silent about THAT.