With each age and stage of living with lupus, I find that there are periods when I have to go back to school. Not a formal sit-at-a-classroom-desk experience, but certainly one where I look at the latest information on studies, treatments, and the ever-evolving “why” of how we develop lupus in the first place.
It’s sometimes hard to believe that there are still many things we don’t know about lupus. Besides “why?”, there is no standard treatment for the disease. Meds or combinations of meds might work for one person and not for another. Lupus still can flare at unexpected times; I might do everything “right,” but still not escape a flare.
The aging process does not stop, and with it comes a confounding set of new body changes. We lupies who reach certain age milestones might celebrate them, but then be even more confounded by symptoms: Is the extra pain the disease, or the aging process? Is my bone loss “normal” aging, or did the long-term prednisone or other meds contribute (or cause) the problem?
Keeping current helps take charge of some of the wondering. It’s comforting to know that researchers are trying to get at the root of certain questions. Rheumatologists are keeping current along with us, which helps to unravel some of the questions of “Is it aging, or is it lupus?” And it is helpful to know that there are more resources through patient advocacy groups, such as the Lupus Foundation of America, that can help us all navigate our lives with the “wolf.”
Yes, we might not want to go back to school. But there are benefits to keeping current. And if reading up on the latest brings an extra dose of hope – I’m all for it! Yes, going back to school might not be so bad after all!
Want to hear about heroes? Here in Southern California, another brush fire has erupted. To me, the term “brush fire” is misleading. It brings to my mind something contained and on a small scale. But this fire is anything but. It started yesterday afternoon and within 4 hours had spread to more than 5,000 acres! By this morning, it was at an estimated 30,000 acres – with no containment. More than 82,000 people have been evacuated, and many structures have already been reduces to ashes. And the fire continues, threatening homes, businesses, and lives.
The fire itself is awesome (not in positive sense, of course, but in its scope). That something could be this swiftly powerful and this wild is both terrifying and compelling. But what is even more awesome to me – in a very positive sense – is the response of the heroes among us: firefighters, news crews, and others who do not run away, but run toward the dangers posed by this monster of a fire. These men and women are putting their lives in harm’s way so that others can get information, find safety, and perhaps, when the smoke clears, have homes to return to.
Yesterday, Cal Fire reported an incident that underscores how amazing those fighting the fires are; six firefighters became entrapped by the blaze while they were “defending homes and assisting evacuations.” Two were injured, taken to the hospital, treated and released – and are back on the lines, fighting the fire!
How awesomely wonderful is God’s creation in the form and character of these brave souls!
Goodness can shine through where there is determination to let it do so. Even in the midst of terrible adversity, it is a great blessing to know these heroes are active in the world. Further help for all of us to not panic, but trust in God!
Does your illness make you feel ugly? How about rethinking beauty?
Months before I was diagnosed with lupus, I lost all of my hair. It was difficult to fully understand, yet each time I looked in the mirror, I could see the effects of something at work, changing my appearance and leading me into a completely unknown world of wigs, scarves, and other ways to cover my bald head.
Losing my hair also made me realize that, as medications, symptoms, and aging combine in our lives, we need to be rethinking beauty or, in other words, what’s beautiful to us. As weight comes or goes, hair loss widens, and rashes or other manifestations of illness affect our bodies, our perception of who we are in the mirror of society’s ideas of beauty change, too. We might, at first, be very frustrated or saddened by the changes we see. Sometimes, we might fall into depression as the person we thought we knew changes physically before our eyes.
But more productive and positive is, I think, rethinking our concept of beauty and, thus, adjusting to the changes we’re undergoing without feeling like a victim to something that is “robbing us” of the possibility of being beautiful.
Yes, losing my hair was difficult to cope with at first. But I learned that with wigs there are no bad hair days, and they enabled me to easily style and restyle my “look” without spending hours working at it. Yes, they relieved much of the stress that comes with getting ready to face the world!
Beauty shines through our eyes and smiles, no matter how much our bodies change. So, if we take time to boost and nurture our spirit within, we become more beautiful, not less, through those very windows into our soul. Courage, grace, love, and light – these all come through us when we warmly welcome life wherever we are.
Beauty also comes with wisdom, the confidence we develop as we weather flare after flare and survive, even flourish in spite of these challenges. Think of a seasoned athlete, no trace of anxiety but reflecting strength. That is beauty that others who are not health challenged might struggle to find, but that for us is part of our lives with illness.
Faith brings beauty to our lives no matter where we are emotionally with illness. So, as we approach each pang, each new symptom, if we bring God with us into the journey, we can rely on fortitude that enhances our own and brings us even more faith and, yes, life experiences that foster grace and beauty.
Even if we do not have our illness throughout our lives, we will age. And that process will bring more physical changes, some of which we won’t find all that beautiful. By rethinking beauty, we enable ourselves to have a context for illness, life, and all the years to come, that isn’t reliant upon the changes of our bodies but rather on the strength and grace that we build.
And that, yes, is mighty beautiful!
Sometimes, a life punctuated by chronic illness seems like a life out of control. Just when you finish a med or a symptom or flare recedes, wham! Something else happens, and you’re back in that dizzying cycle of doctor-to-pharmacy-to-doctor-to-home.
I know well how much of a chronic illness cannot be controlled because of my years of experience with lupus. Yet, there is also much that we can take charge of, even in the direst of circumstances. Here are some of the things we can control:
How much we worry. In my new book, Don’t Panic!: How to Keep Going When the Going Gets Tough, I devote an entire chapter to worry, that gnawing emotion that disturbs peace, sleep, our most precious of relationships with others, and even our connection with God. We often couch our worry in a phrase that begins, “What if…” and we finish that sentence with the most awful example of what could happen if things don’t go well. It try to always take control of that runaway worrying by changing “What if…” to “What is…” Stick to the facts and take the days as they come. Control the worry, and you invite greater peace of mind.
Our time in prayer. Perhaps we don’t have as much church time or “just sitting with God” time as we would like when we’re running from doctor to doctor or are too sick or in pain to go out. But we can pray wherever and whenever we are – and that’s one of the most beautiful parts of faith! We take our faith with us. We are earthen vessels, carrying Christ all the time, everywhere. So, we can pray whenever we want to. We control our prayer time. And the more we turn to God in that blessed conversation, the more peace and calm we will have.
What we eat. Yes, each of us has a particular budget, and food availability might be a problem if we don’t live near abundantly stocked stores with great variety. But what travels from our fork to our mouth is completely within our control. We can say “yes” to the cake or salad…and we can also say “no.” Yup. It’s that easy. And if cravings are taking over, we can tame those like we would an unruly pet – gently and lovingly, but very firmly.
Whether we encourage or discourage ourselves and others. So often, if we are negative inside we are that way outside, too. And when we turn our negativity toward ourselves and others, even in the slightest degree, we’re chipping away at the love and support we crave and could benefit from and give. Positive words, positive actions, kind thoughts – these and all other encouragments help build us up and are completely in our control. It might take awhile for these to feel more natural, if we’ve been submerged in the darker side of life with chronic illness. But here’s where we have control: Each time the effort seems too great, we can go back to prayer, Scripture, our faithful friends. And we can wrestle control away from the darkness and fill ourselves and our lives with light.