“My health may fail, and my spirit may grow weak, but God remains the strength of my heart: he is mine forever.” Psalm 73:26
I hope that everyone had a wonderful Thanksgiving holiday. My oldest came home from college and we were joined by a few friends from church. Other than the 18 hours of cooking over two days, it was a pretty relaxing affair. The highlights are the pumpkin, pecan, and sweet potato pies. But for some reason, everyone but me takes a special liking to the pumpkin torte that my wife makes.
I’m taking a break from the RA Weapons series to discuss how RA causes adjustments in expectations.
On Friday after Thanksgiving, the Christmas lights were installed on the house. It’s a fairly straightforward task being that the design hasn’t changed in five years and three children joined in to help. After the lights were up, the snowboards and skis were pulled down from storage for adjustments, tuning, and waxing. The kids learned to wax their own equipment. It’s fun to watch the kids embrace this lifelong sport. There are numerous mountains within an hour or so that have wonderful ski runs.
After the few hours on these responsibilities, the body made it clear that it had enough. The next couple of days resulted in much rest and joint pain. And of course, the ski/snowboard work got me thinking about how realistic (or unrealistic) my expectations are for future activities. Of all physical activities, snow skiing ranks the highest for me. My skis were waxed the other day but I have no idea if/when skiing will be a reality. But the time will come very soon when we’ll load up the equipment and head to the slopes. I’ll try to ski but my expectations are quite low at the time given the fact that a simple job of hanging Christmas lights kicked me pretty hard. Fellow RA bloggers Terry and Kelly recently spoke about how RA caused them to adjust their expectations for life activities.
This leads to a broader reflection on changes in expectations as RA takes a toll and medication changes are tried. In October, my doctor switched me from Enbrel to Cimzia. The last monthly dose of Cimzia was injected on November 4th. The next injection is scheduled for this Wednesday. This will be the 3rd injection since switching over from Enbrel.
Fellow bloggers Terry, Kelly, and I are in the process of trying new medications and we all seem to be attempting to come to grips about what to expect in terms of effectiveness. All three of us can point to a time when we were completely off major medications and can attest to the fact that symptoms were worse during those periods than we were on the “ineffective” previously used meds. But what can we expect with the new medications? In order help track impact and attempt to answer this question, I decided to keep a daily journal of RA symptoms starting in early November. This journal will be taken to my upcoming rheumatologist appointment.
In addition to listing specific symptoms, I created a scale of 1-10 for both energy level and overall joint health. Overall joint health included pain, stiffness, and swelling. A high number is positive and a low number is negative. I also tracked the number of days with headaches since I suspect Cimzia was causing these regularly. A simple spreadsheet was used to track the daily scores. A graph (see below) was produced to display a pattern over time.
The first thing I noticed was that everyday seems to be different. The second pattern is that energy and joint health appears to be related. And finally, there is a slight downward trend over the month since taking the Cimzia injection. This is not surprising since the effects wear off over time. The expectation is that the upcoming injection will bring some relief (and maybe more headaches). Relief is my hope.
I’m considering creating some sort of tracking tool based on this process so that RA patients can easily track changes over time. Feedback from readers would be appreciated. You can contact me via email or leave a comment on the blog.
Will Cimzia work long term? Will snow skiing be in store? These are questions that can’t be answered right now and expectations must be tempered.