The phases of lupus - thank goodness there are some!
Phase [feyz] - a stage in a process of change or development.
Oh yeah. That pretty much describes it. At three years of age, Deirdre has mastered the art of change and development. And as far as "phases" go, we've seen our fair share of them since her birthday last October. She is constantly growing - emotionally, mentally, and physically - and tell you the truth, sometimes, it's hard to keep up.
Of course, I love my little lady bug. She's my favorite first baby ever, and she's perfect in every way. It's just that I wish a few of her phases could have been shorter rather than longer.
I don't think I'm jinxing myself when I say that we're successfully over the 3 to 3 1/2 year old Independent phase, and we've recently conquered the Resistance to the Afternoon Nap phase. Notice I'm not so naive as to believe there won't be a 3 1/2 to 4 year independent phase, or a Reluctance to Nap phase ...but since she's a whole month shy of 3 and 1/2, and she's currently napping like a champ...I'm going to celebrate my little victories as long as I can.
And there have been so many of them. In fact, I was at lunch with some girlfriends last month, and I was seeking advice on quelling the 5-10 minute tantrum Deirdre was throwing at nap time. Like good friends, they replied, "Five to ten minutes? You're so lucky. Our kids go on for 30 minutes." Nice, right?
Of course, during that same conversation, one of my friends asked how Deirdre was at bedtime, and I naively replied, "She's fabulous. Why?" My girlfriend went on to describe the difficulty her girls had going to bed and staying in bed...and the peppering of questions to get up to go potty, get a drink of water, etc. etc. Well - Deirdre had never done any of those things...until now. Consider this new phase "on."
And yet, the good news is that for every challenging phase there's a distinct beginning...and a glorious end. Just like lupus. A flare does not last forever, despite what most of us may think come week three or month five of active disease. There are ups and downs - and having had some very down moments in my time, I can promise you that I never, ever believed I would experience the long, consistent string of ups that I do today.
But that's why I have to stick with my story that life with lupus CAN improve. The emotional and physical pain that you experience really can fall by the wayside, given the right treatment, time, and attention. And ever so slowly you can begin to rebuild your life, despite your chronic illness. As I mentioned to a representative from HGS (Humane Genome Sciences) recently, it just seems to take a whole book's work of effort! (Hint, hint!)
Comments
This time last year I was in a horrible flare that didn't seem to be easing at all. To top it all off, I had both my diagnosis and treatment retracted and stopped even though I was using crutches and painkillers to get around.
Now, I'm not only diagnosed, but have been well enough to start work again and I haven't needed my crutches since May, all thanks to learning how to look after myself. True, I've had to start back on Celebrex but, you know what, who cares? It means I can get out of bed in the mornings and be on my feet most of day usually without too much swelling.
I'll never forget the bit in your book where you mention about determining the 3 things you want to achieve and the 3 things standing in your way. That was the turning point for me I reckon.
And as a nurse, perhaps you can use the information and experience you've gained over the years watching other patients make, what you would consider, good decisions re: treatment to help make yours. Just like all of us do, you'll probably have to filter those experiences - but ideally you can balance the emotional strings (b/c it is YOU were talking about!) with the practical side of things in order to come to a satisfactory conclusion.
My hope is that you'll find clarity as well - at least enough to satisfy yourself with a decision, be it yes or no!
Thanks for this site - and for your wisdom and encouragement!
I quoted you in my article about lupus http://theadventurouswriter.com/tips/surviving-lupus-diagnosis/, credited you, and linked to you and your book. I hope you don't mind! :-)
All good things,
Laurie
Thanks for this site - and for your wisdom and encouragement!
I quoted you in my article about lupus http://theadventurouswriter.com/tips/surviving-lupus-diagnosis/, credited you, and linked to you and your book. I hope you don't mind! :-)
All good things,
Laurie