My friend, who I’ll call Empress in this story because she really is an Empress, is marking her two-month anniversary of Diagnosis Day.
In my friend’s case, the diagnosis is rheumatoid arthritis. R.A. is incurable, painful, debilitating and potentially fatal. Treatment plans vary according to the individual and healthcare provider. The disease, like many autoimmune illnesses, flares and then quiets like the hesitation between Fourth of July fireworks, making you wonder if each display is another burst of sparks or the blazing finale.
Anyone who has had a medical diagnosis of a nasty disease knows that this particular day will stand out among other days. For many, D-Day can offer a strange relief. Finally, there’s a name for all of the unexplained pain, dizziness or whatever bewildering symptoms. On my D-Day, my first thought was “Hey, maybe I’m not crazy after all.”
On my D-Day, my first thought was
“Hey, maybe I’m not crazy after all.”
I’d had two years of odd rashes on my face, legs and arms. My fingernails warped and rippled. I was always tired. My joints felt like balls of fire. My ribs and heart were sore. I was depressed yet caring for a 7-month-old son while pregnant with my daughter. When my physician called me at home one evening with the results of my most recent round of blood tests and told me that I definitely had systemic lupus erythematosus, I was almost delighted. Finally, a name! Finally, a reason! Finally, a treatment plan!
Photo credit: Albumarium/Chiara Cremaschi
The odd euphoria of D-Day ebbed quite a bit when I realized that remission was not around the corner and that the coming years would require that I change my expectations about certain facets of my life that I thought were part and parcel of who I am. Or was. Or will be.
Still, if I were to place SLE in one hand and my old self in the other, I would hold on to the Me with SLE. I used to let little things get to me but having this disease has forced me to see life from a different perspective. I don’t get ruffled easily. I avoid drama. I appreciate more. Sure, I miss out on some things due to pain, fatigue or my sensitivity to sunlight, but what I do have I hold more closely to my heart than I think I would have pre-SLE.
Empress is moving from the shock of D-Day through the grief of losing a part of yourself without really knowing what the part will be. Yes, there’s a reason for today’s blinding pain and the mental fogginess. The question really is all about tomorrow and the days after that.
Of course, no one knows from one day to the next what will be gained or lost. I would argue that for the most part, most people can live with the belief that tomorrow will be much like today in terms of physical and mental capacity.
For the person with a “Diagnosis” it’s virtually a certainty that each day will be uncertain. Sometimes, I see myself as an adventurer going into each day and night with hope and curiosity. Other times I’m grumpy and tired. We all build our own way of adjusting. I don’t know what the Empress will build for herself as an outcome of D-Day, but I’m hoping it will be a crystalline outgrowth: reflective, illuminating and precious.
Do you have a story about your D-Day that you’d like to share? Let me know in the comments below.
We’ve all heard about Fashionistas and some of us may even have one in the family. These people are easy to identify because their need to wear the hippest trends always trumps what is sensible. Catching a flight? Wear gravity-defying heels. Skiing? Throw on a fur coat (faux or not). Grocery shopping? Gucci sunglasses and snakeskin gloves. Unless they fall off their heels and knock someone down, Fashionistas provide a harmless source of amusement.
On the other hand, Passionistas are getting on my nerves. We’ve all heard their seductive cajoling: “Find your passion” or “Chase your passion” or “Be passionate about your passion.” We’re further told that work isn’t work when you’re passionate about your work (huh?) and that we have the opportunity to pay passionate people a lot of freakin money to find out what we’re really passionate about.
Passion schmassion. Passion can be brilliant when first pursued and explored but with time it can lose its eyes and fluffy tail. (See The Velveteen Rabbit). Don’t get me wrong. I believe in the pursuit of happiness and meaningful existence. It just seems to me that we’ve taken a good thing – passion – and turned it into yet another way to measure our shortcomings.
One-track passion can erode all too easily if the rest of the garden is left untended. This ubiquitous lecturing on passion should be expanded to include the surrounding soil in which we plant the bloom.
I consulted with global experts and among all of the well-intentioned, incredibly intelligent people that I found pontificating on Google, two people without college degrees and somewhat notorious pasts nailed it down for me.
Before I reveal this life-changing tip about passion, let me share some of the other messages I found:
Start the day early and end it late. If you’re sleeping, you’re wasting time.
Always have your passion on your mind. Always.
Surround yourself with your passionate work. Bring it home with you, too.
Don’t be polite. Be passionate (which apparently isn’t polite).
Be dedicated, hard-working, focused and willing to fail.
Talk about your passion and surround yourself with like-minded people.
Bore people with your passion.
I suppose there are little golden kernels in all of those tips along with an unhealthy dose of guilt-inducing mandates. There should be some acknowledgement that a perpetual spring of motivation would have to nurture this flaming impolite passion. Or can we be allowed to accept that passions can rest, sleep, multiply or change over time and THAT’S OKAY.
In every case, there is one requirement for leading a sincerely passionate life.
Paul McCartney and John Lennon said it best. All you need is love.
Love your dog. Love your partner. Love the view of the Tetons. Love a breath of fresh crisp air. Love yourself, muffin top and all. Love is meant to be planted, shared, and spread. If you keep digging in the same spot, all you’ll get is a hole.
Hearts have a crazy capacity to beat and beat, on and on without much instruction from us. It’s only right that we repay such single-minded loyalty from a ball of muscle by opening our hearts to all of the beauty around us in a decidedly unsingle-minded way.
Anyone can come up with at least one thing that wakes them up in the middle of the night. Barking dogs, thunderstorms, nightmares and so on.
I recently had an unusual wake-up call at 5:15 a.m. when I opened my eyes to a sudden painful scrunching in my left chest area. Not wanting to disturb the peaceful slumber of the two cats and husband beside me, I told myself to breathe calmly, deeply, and (hopefully) continuously. I soon felt a mighty thump in my chest, a release of the squeezing feeling and a burst of warmth flowing to the ends of my toes and fingertips.
So I rested there for about an hour, telling myself to relax relax relax, there was nothing to be concerned about, no need to elbow my husband or nudge the drooling cats off the side of the bed. After all, it was highly unlikely that I was having a heart attack of any type because – well – because I don’t have heart attacks. Then I started ticking off the facts of my basic profile:
That’s five out of five. What would an intelligent person do at this point of realization?
I decided to ignore all of the medical information about heart attack symptoms that I know very well because I’m a healthcare marketer so it’s my job to tell people to get immediate medical assistance if there’s even a miniscule chance that they’re having a heart attack. I fell into the high percentage pool of people who think that it would be terribly embarrassing to call 911 or be driven to the ER, only to discover that the problem was a panic attack or heartburn. After all, what could be worse: dying of a heart attack or having a doctor tell you that you’re not having a heart attack? Ummm …
Anna Gunderson PA-C chastised me gently but thoroughly during my clinic appointment at 10am that morning, reminded me that “time is muscle” and that I should have come to the ER via driver or ambulance, and by the way, shouldn’t I know better?
At the end of the day, my lab tests, an EKG and chest X-ray indicated that I hadn’t suffered a cardiac event. My rheumatologist suspected pericarditis brought on by systemic lupus. While I felt somewhat relieved, I was also smacked with the reality that I could have a heart attack and that in fact, many of my friends and acquaintances could have a heart attack at any moment and need to have their lives saved by the very people with whom I work.
I’m making a donation today to our hospital foundation’s campaign to raise funds to buy a Zoll defibrillator unit for our ambulance and a cardiopulmonary DASH monitor for our E.R. I discovered that last year alone, our current E.R. DASH monitor system assisted 126 people in cardiac distress and almost 500 people with respiratory ailments.
Please consider supporting this campaign for acquiring this essential equipment and who knows? It just might save your life.