It was a disappointing visit at the doctor’s office today. My numbers are up. After receiving trial medication for Crohn’s Disease four weeks ago, my numbers are expected to go down. I did see some improvement, as did my husband. We were both excited about what the next few months would hold and then last week – I hit a major bump in the road.
Pain levels soared up again and the rules are: they count the last 7 complete days of your pain scale diary. The two weeks prior to that were awesome! But the week they scored was my worst week. What it means: if my numbers don’t improve in 4 more weeks, I’m dropped from the study. Even if I’m feeling some improvement and grateful for it, it has to fit in the parameters of the study at the exact time they give. I see why they have the rules they do, but in the end, no one likes to be playing the numbers game.
I could have another great 3 weeks and then the last week before my next appointment could ruin it all. Like many instances in life, one bad episode ruins the whole program. One delicious apple is ruined by finding that half of a worm in one bite. So the progress of Sharon the guinea pig is measure in the final week. It is what it is and it will be what it will be. I will trust God at this point to see me through.
In the meantime, I’m gong to reevaluate areas in my life where I may have inadvertently put others into a forced numbers game. I’ll try to take a look at the whole picture, not just one isolated bump in the road. I think they call that grace.
“It’s the biggest thing happening in East Texas right now.” This is, of course, from the health care perspective. So now I find myself in the midst of the most happening thing in my neck of the woods – a double blind study about whether or not a particular medication is helpful to Crohn’s patients. There are three things that could happen. I could get a generic dose of the medication. I could get a dose that is measured for my age, height and weight. I can also end up with the placebo. I feel like I’m in one of those “you choose the ending” books that I used to read in junior high.
Blood work, EKG, lots of questions, lists of medications and on and on I went through the screening process yesterday. Am I a good candidate for this study? That is still to be determined. In the meantime, I have a diary. I’ve never been good at diaries. This blog is the closest I’ve ever come to writing something down about life on a regular basis. But now, I have to record each day the meds I’ve taken and my pain level and a few other things that Crohn’s patients will know about but I won’t mention here.
My assumption? Once I’m sure to be in the study, I start the diary. Boy was I wrong. I’m supposed to start it right now! These people need to know how bad my pain level is and everything else to even see if I would notice a change due to a new medication. They have to see a record of several weeks of how bad it is, so they will know if I’m actually improving or not once the medication (or placebo) starts.
I’ve always seen myself as a strong person, able to overcome. Keeping track of my pain isn’t going to be easy. I’ll have to admit just how much this disease has beaten me up the last couple of years.
I’m going to have to be broken, vulnerable. Evidently, that is when healing can begin.