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.
Main gate of Indiana University with Tulips
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.
College Visit
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.
My First Biologic Medication
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.
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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.
That advice to not wait for THEN, but embrace NOW – I do wish I’d managed to do that better along the way… It’s something that’s truly coming home to me now as I wait for the script for my next bio to come through. I spent far too much emotional energy on THEN, and not nearly appreciating the NOW.
Thanks for the note Karen,, I like this title a lot. I think we all spend time thinking of what will happen when we get to then. I know I did for years, I hope you are doing well and know I am sending positive energy for you to get that script.
The script arrived late last week, and has gone to the chemist today. They have to order it in – I start next week. Trying to not think about that edge of the abyss feeling of starting a new medication…not knowing what will happen…GAH!
Karen, please know that Sheryl and I are sending the best positive energy to you. I am hopeful it works out, but yes I know how it feels when we move on to the next one. Scary indeed.
January 2001 is when I started on a biologic as well. I remember getting out of bed and feeling almost whole again. Like You, I’ve had good and bad times but feel blessed to have RA now and not 50 years ago when my grandmother had it.
It was the most amazing thing. I felt unbelievable, like a fog or haze of pain had been lifted. I also am thankful that I am not alive 50 years ago. Someday this will be figured out and when it is, I hope no one looks back on 2001 and says thank goodness we did not live 50 years ago.
Reading your piece made me think of my own journey with RA. My “then” moments are those moments in my memory I could tell I was getting closer to my before RA normal. I recall several “then” moments as mine did not come all at once. The first was after starting my second biologic, the first one I tried did not help me. The next “then” moment occurred after I changed my diet. The third “then” moment came two weeks after my synovectomy. Each “then” moment moved me closer to what I remember as my before RA normal. Like you, I kept thinking I’d feel better tomorrow or next week. My weeks turned into years. I call those years my lost decade. I now work very hard at modulating my day-to-day life in order to maintain the current disease management. Thanks for the opportunity to look back with gratitude for every “then” moment!
Thank you for the wonderful comment. I think most moments of then are really stories of then. We become part of a narrative that consumes us until we break the pattern with an idea or event and then we often think hey that happened overnight when in fact it played out for days, weeks, or even years. I appreciate your remembrance as well.
A very touching post, Rick. And I hope it helps others in the same position make the decision to live in the now, instead of then.
Thank you Emma. I think we live with many moments of then. I hope int he coming year I will live more in the moment of now instead of then.
I am glad you decided to make your ‘then’ a ‘now’. Lovely message, as always.
I could relate this to diabetes as well as. I know I would feel awful in my mid career and I would say to myself, complete this contract or turn in this or that work and then you will get diabetes back on track. Until I got control of diabetes my life was a series of then. I was fortunate to find a moment of now with diabetes as well. My moment of now came when I talked to a bunch of High school kids with diabetes. I was the only person in the room without a pump. I left and ordered my pump and had it seven days later. That was my moment of diabetes then.
I’m glad you started the biologics. I was diagnosed 5 years ago. That same year I was also diagnosed with two cancers which required surgery and radiation. At the time there was some question about the cancer link and the biologics. So my doctor didn’t prescribe them until we went through everything else. She said she regrets the decision. Orencia worked well for a year. I started Actemra last year. It was working. Then I became disabled because of my hip so I stopped. MTX plus Plaquenil and occasional dose packs of Medrol have kept me afloat. I see my RA doc next week and she will recommend that I go back on Actemra. I will. I am RF negative and don’t respond to the biologics like those who are RF positive do.
Mary, I hope you are doing well. Thank you for signing up for my mailing list.