The fact that we have lupus testifies to the undeniable truth that we are imperfect. As much as I would like to think differently, I must admit each time I look in the mirror that I am imperfect in many ways. While having a right self-view is very important, it helps if we can accept our own imperfections.
If we have lupus, there is absolutely nothing we have done wrong that caused it. It is not our fault, we are not to blame, and it is not a result of failing to do some “sure-fire” preventive measure. Lupus is an autoimmune disease that cannot be predicted nor prevented. This is an undeniable truth.
Lupus is unpredictable. The frequency, severity and duration of flares cannot be predicted. They can be managed, shortened and responded to, and the risk of flares can be reduced by proper care and medication. But, the undeniable truth remains that the “one predictable thing about lupus is its unpredictability.”
Everyone with Lupus does not have the same blessings and challenges. Unfortunately, all does not come out equal in this life, but everyone with lupus has the right to choose their primary focus, either on the blessings or on the challenges.
How we view the lupus adventure undeniably affects how we cope with lupus. Celebrating the positives in life helps take the sting out of having lupus, or any chronic illness.
I am extremely thankful that I have a wonderfully supportive husband and family, a great job, and countless other important resources. My support circle includes dear people who love me, pray for me and encourage me in my faith. These precious friends and loved ones help me remember that God is with me in my daily struggle with lupus.
It is another undeniable truth that supportive family and friends make a great difference to someone coping with lupus. Unfortunately, some patients face their lupus alone, lacking this type of warm support and under-girding. Their striving for victory over lupus’ effects can be difficult, private and very lonely.
Social isolation sometimes associated with chronic illness can easily fuel feelings of self-pity and great discouragement. People who are supportive and caring can positively influence someone struggling with the invisible challenge of lupus.
Medical care is expensive, with or without insurance. This is yet another undeniable truth about lupus. For example, surprisingly, we accumulated enough out-of-pocket co-pays and other medical expenses to save money on itemized medical tax deductions. This fact says a great deal about lupus treatment, all by itself. This example doesn’t begin to express the high cost of lupus treatment borne by my insurance company and self-insured employer. My income tax deductions are clear evidence of the truth that, even though I have excellent insurance, my medical costs count up, too.
Choices of consequence
Our choices have consequences — we all have some good and not-so-good results coming from the decisions and choices we have made throughout life. Choices influence our lives and show something about who we are.
Our choices influence the home we live in, the friends we keep, the state of our finances, the work we do, the clothes we wear and the food we eat. These choices show our personal priorities and values. Choices we make impact our lives many ways, including influencing our health and lupus.
For example, if I choose to skip my medications or spend several days out in the sun, it is certain that these choices will cause my lupus to flare, which in turn could cause severe organ damage. Similarly, a choice to descend or climb a flight of stairs brings negative consequences impairing my mobility for days afterward.
We cannot choose lupus. But, we all at least have some choices about lupus and it’s impact in our lives.
When I was a very young teenager, I started smoking. Soon, I was given two extremely clear choices, ultimatums. “Stop smoking,” was echoed by my choir director who threatened to kick me out of a singing group, and my gymnastics coach who promised to oust me from the team.
I made a choice that preserved aspects of my youth that mattered the most to me then: music and sports.
That meant making an opposite choice that bucked the tide of what my peers were choosing, made me a little “un-cool” (in the vernacular of the early 1970’s) and ultimately led to social choices that kept me far away from illegal drugs.
Choosing wholesome things I loved more than the negative influences of peer pressure changed my life direction and helped put me on a vastly different path than before.
Choosing well to stop smoking had a part in influencing my ability to continue to sing in college, and eventually changed some life directions years later. Another important choice radically change my life direction. Choosing to reject my parent’s religion and become a Christian when I was 16 had an even greater impact on my life than choosing music or sports, both then and now.
Largely because of my newly found faith in Christ, and partly because of my singing I could afford college. I ventured out toward college without a penny to my name, and academic and music scholarships were blessings that funded four years of study, nearly debt free.
Music and singing opened the door to a college education, first in California and then in Arizona. I was privileged to travel half of the U.S. doing summer concerts. Music helped foster friendships and relationships with fellow musicians (including meeting my husband!)
For thirty-five years I have enjoying the blessings of being able to sing solos, and love singing with others in ensembles and choirs. I choose now to honor the Lord through music.
My education led to my career as a legal government manager, and ultimately that career provides me now with opportunities to make a real difference in government law. My professional duties are a source of daily fulfillment, and give income, medical insurance (a means to better health) and a pension for my retirement. Without seeking to educate myself, I would have been ill-prepared to fulfill the responsibilities of my career as a legal manager.
These two early, seemingly small choices in my teen years, filtered down over time with remote impact on many aspects of my daily life, even today.
Choices to change your lupus
Many other choices along the way contributed to who I have become and the place I find myself in today. If we could predict the outcome of each choice, perhaps we would never have the courage to risk and sail out into adventures and choices with unknown outcomes.
My choices today will definitely influence tomorrow, but I have no way to precisely predict how they will affect me. But, by listening to wisdom and making good choices, I am much more likely on a better path, headed toward a better end.
What choices can you make today that will affect your lupus positively?
Here are some of mine:
- Eat healthy foods, avoid unhealthy ones, drink enough water
- Get enough sleep and rest when fatigue hits
- Take my medications, every day, every dose and get my Benlysta infusions like clockwork
- Keep my doctor appointments, get my lab work done and be a compliant patient
- Exercise when mobility permits and rest when lupus flares
- Cultivate the relationships and friendships that matter
- Advocate for lupus awareness, educate and encourage other lupus patients
- Plan on being a victor, and reject the temptation of a victim mindset
- Intentionally cherish each day God gives me