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.
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.
I was born and raised in Rupert, Idaho. When I was 19 my family moved to Phoenix, Ariz. I moved to Driggs when I married Mario, my best friend and the love of my life.
We moved around for the first few years of our marriage because of my husband’s work. Then we had our son Colby, now 8-years-old. He is full energy, excitement and jokes. He is a very happy, healthy boy.
In the last several years of my life I have begun to reflect on my health and how to improve it and become healthier. It’s not that I am not healthy, but I have struggled with my weight for most of my life so it has been more of, “that’s just who I am.” Through the years, I have realized “yes that is who I am, but I don’t have to be PHAT (Pretty Hot and Thick); I can be PHAT (Pretty Hot and Thin).
Two summers ago I started riding my bike around victor with my son. I also was able to ride my bike from Victor to Driggs all in one ride. I was walking the bike path every day as well. I started to get stronger and I had more energy but was still unable to lose weight. I became very discouraged and disappointed in myself and all the work I was doing while getting no results.
At the start of last summer I didn’t do much, but then I told myself “the past is the past and out with the old and in with the new.” I was not going to let the past rain on my parade. So I started up my journey where I left off, just without the bike rides, and I started to eat less. To my surprise the weight started to fall off — I lost 43 pounds, HA-AY! (If you could have seen me, I was dancing my happy dance).
I want a lifestyle change, not a quick fix
Then, I hit my first plateau and gained 14 pounds back because I stopped exercising for most of the winter. As the snow kept falling, I started to work out somewhat at home w using videos, my treadmill and some free weights.
Now that the weather is nice (Summer is finally here now, right?) I can go out and walk again, but I wanted to step it up this time.
I joined Crossfit (what was I thinking? Oh, that’s right, I wasn’t thinking when I joined Crossfit)!
My real motives for losing weight are to be healthy and avoid illnesses and live to see my son grow. I want to be able to go on outings with my family and have fun without having to stop and rest every 10 minutes. I want a lifestyle change, not a quick fix.
I’ll keep you updated about my wellness journey through this blog, and I hope it will provide some inspiration for someone out there to kickstart their own path to wellness.
Disclaimer: This blog discusses my personal wellness goals and is in no way a soapbox to tell anyone else how to eat, exercise and/or live their lives.