Feeling Twice as Good as at Half My Age
Decades of unexplained symptoms finally resulted in a lupus diagnosis. What a relief to finally know what to call it, and how to treat it. At half my age, looking toward the future was a little uncertain and even threatening. Thirty years ago, many people told me the outdated idea that after diagnosis life expectancy was about 10 years. At first, it seemed this could mean disability, no cure, and an early death. This was a scary set of thoughts for a young wife and mother of two small children!
The Internet was still mostly in academic circles, and in its infancy. Although in a few years the “information highway” would take off and become the Internet as we know it today. Before that, reliable medical information could be researched using dial-up using phone land lines and a modem.
This type of research service was expensive, paid for by hourly credit card charges, and “normal” people could only go to a large university or law library to use it. Early career experience as a paralegal working on medical malpractice and injury cases exposed me to the online medical information service. At the time, most people did not have computers at home, and mostly only doctors and lawyers had access to expensive legal and medical research databases.
So, doing research about my initial diagnosis: “abnormal high anti-nuclear antibodies” and “lupus-like polyarthritis” required a trip to a nearby county law library. After pouring for hours through massive search results for these terms, some recurring facts emerged. The search engines as we know them today did not yet exist. By reading through medical articles, the out-of-date online information was slowly pieced together to explain what ANA was, and what a lupus diagnosis might mean. These old research databases were not very encouraging, and the picture they offered for the future was discouraging.
Medical treatments and phases of lupus life
Moving along through the second half of life since then was a rewarding adventure, full of increased knowledge, improved treatments, and vastly improved health. The journey has had a good number of bumps along the way, but over the long haul the outcome has been so much better than was ever expected! Moving from the initial partial diagnosis to a full systemic lupus diagnosis added certainty to the nature of the challenge. Doctors had a clearer focus on treatments to use, and were able to tap into clinical trials and new medications to manage the lupus.
An important part of the partnership between doctor and patient has always included willingness to comply with new approaches that were presented. Using chemotherapy drugs was tried for about ten years, and then it was time for a change. An insightful general practice physician asked if the rheumatologist had “thought about trying one of the new biologics” to manage difficult symptoms. This idea led to a clinical trial that triggered a several year remission, and later opened the path for Benlsyta when lupus symptoms came back with a vengeance.
Like for so many other lupus patient, the years of the journey are inevitably marked with mental milestones of major life events, periods of major lupus activity, and new medicines!
First, were the pre-diagnosis years of rashes and pain, followed by many mildly bumpy Plaquenil years.
Then, there was the year to end all years of mourning my mother and developing organ involvement, including CNS problems. This began the difficult decade of Methotrexate and Imuran.
Next, were the amazing Rituxan clinical trial remission years, followed briefly by a miserable year striving with insurance appeals while hoping for approval of more Rituxan.
This takes us to the current Benlysta years. This has to be the best decade since childhood, and perhaps even better than childhood, when lupus symptoms first began their intrusion into a young girl’s life.
Feeling twice as good!
Then came the present realization that sixty feels better than thirty ever did! It is a true blessing to feel twice as good as I did at half my age! Now, the future looks better than it ever has before.
At sixty, it is great to feel twice as good as at thirty! Thirty years ago, it never seemed possible that now would be better, not worse, that it was then. For this small miracle I thank the Lord daily. My cup is full of joy!