My Moment of “Then”
My moment of “then’” occurred 6,182 days ago, on January 21, 2001. Because that was shortly after receiving my first biologic medication for RA. It was a Sunday and when I woke up, I felt truly free for the first time in years. I went skipping around the house and shouting, “I’m free, I’m free.” As I recall I was singing the song from Tommy, “I’m Free”. Ok, I am an old fart; but for the first time in years I felt free in comparison to prior burdens on my body.
So why is it a moment of “then?” For many years I had been battling this anchor in my body. It made moving and walking nearly impossible. I was in near constant pain and with the pain came the awful feeling that I may never be able to be myself again. I kept saying to myself, “it’s nothing. Let me take a nap (I took many but it never really helped), let me push through and then it will be ok. Once I get through this week at work then I will be more active and have more stamina.” The problem was that no matter what I did my moment of “then” never arrived until that Sunday in January. But that moment of “then’’ did not just occur. It took planning and careful consideration to achieve.
In February of 2000, almost a year before my first infusion, I took my son, Patrick, on a visit to Indiana University (IU). He was a senior in High School and I was looking forward to taking him to a campus visit. He arranged a campus tour and a meeting with an Admission Adviser.
As a two-time graduate of the University, I wanted him to attend IU so badly. IU was a place that gave me great joy, and here was a chance for my son to have that same joy. If he liked the campus and tour that day I knew nothing could make me happier for him. That week my moment of “then’’ was that campus visit. On the way to the visit I was driving and talking about IU but even a small 45 mile drive proved too much for me. Upon arrival at the campus I was so exhausted I could not go on the tour. Instead I waited at the visitor center, sad that I was not able to walk along with him.
On the way home I told Patrick I was over worked, but that when we arrived home then I would rest. The minute I said that I realized I was living for a mythical “then”. I had to ask myself when would “then” occur? With one son in college and another about to go I was tired of waiting for “then”. At my next doctor appointment, I made sure to explain how I was truly feeling. My doctor ran some tests and in July 2000, I saw a rheumatologist for the first time. He was the one to diagnose me with RA and he laid out a plan to have me use a medication I had never heard of (methotrexate) until we could get insurance approval for a newer class of medication called a biologic. He promised once I started a biologic medication. I would then start to feel much better. It was all overwhelming.
It took a full three months for the biologic to be approved (these were relatively new medications in 2000) and my first dose was scheduled for January 2001.
In a way, knowing I had RA made my life easier, but still I was living for “then”. On Sunday January 21 I woke up and felt what “then” was really like. It was an amazing transformation. Before that day “then” seemed unrealistic. But wow on that Sunday I felt renewed. On that day I knew I had made the right decision to begin a biologic medication. My “then” became, “NOW I feel better!”
Of course, there have been some ups and downs along the way. Over the course of 16 years I have had to change my biologic medication and sometimes I do not feel perfect. Regardless, I still think of that particular Sunday in 2001 when I knew I would have a life beyond sitting in the visitor’s center.
Using a biologic medication is a decision I have never regretted. In fact, I refer to the time before I had my first dose as the time before “then”. Today when asked by people who are newly diagnosed with RA if I could do it over, would I still opt to use biologic medications? I give them all the advice I wish I would have received. Stop waiting for that moment of “then’’, instead make your moment of “then” your moment of now. I know if you do you will feel so much better. Because frankly moments of “then’’ are too precious to put off.
This post was sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. Janssen compensated me for the time I spent collaborating on content for Joint Decisions, but all thoughts and opinions presented here are my own. All thoughts and opinions presented here are not the thoughts and opinions of Johnson & Johnson and should NOT be taken as medical advice.