Of course, I knew what the definition of "chronic" was - but I didn't understand what that really meant, and I certainly didn't understand how it applied to me and my life as a driven, successful, motivated 26-year-old. I didn't get that I was going to have to contend with lupus for the rest of my life. I even wrote in my journal during that first month after diagnosis, "I can't wait until this is over so that my life can get back to normal." Well - that's not really the nature of a chronic illness, now, is it?
So what, in particular, didn't I understand about the word "chronic"? Here are just a few things that took several years to sink in:
1) Managing my medications would take constant re-evaluation: The words "trial and error" should be part of the lupus sales pitch, in my opinion. I can't believe how many different medications I've tried over the course of 10 years. Whether it was ineffectiveness, an allergic reaction, or intolerable side-effect, you name it, I've had to switch drugs because of it. And often times, one drug would work wonders...but only for a short period of time. And then I'd have to switch. Or a drug would work, but not in conjunction with another one I needed, so then we'd do another switcheroo.
And I can just feel those lupites out there reading along, nodding their heads in agreement. It's never an easy fix when it comes to lupus and our drug cocktail of choice...but knowing that is half the battle. Today, I'm prepared for the possibility of switching - and I'm the first to call attention to that ineffectiveness, reaction, or adverse side-effect. Because I've learned - the sooner we switch, the sooner we can try something new that just might work!2) Manifestations of the disease would continue to change over the course of time: This was another big one for me. I had in my head that, after that first flare, the only things that would be affected by lupus were my lungs, joints, glands, and throat. So much for that pipe dream! As my disease evolved, so did my symptoms. Yes, it's true that when you flare, you tend to get the same symptoms...but there can always be a new one added to the pot. And during those first 4 years or so - there's was a new addition every few weeks, it seemed. At some point or another, I added rashes, sores, hair loss, anemia and other blood disorders, heart trouble, kidney trouble, pancreatitis, angioedema, food allergies, and a whole host of other issues that took me by surprise. You read my book, and you'll have an inkling of the breadth of the disease and its symptoms. I just wish I'd known first!
*Note: Dr. Wallace's "The Lupus Book" is extremely helpful in outlining all of the possible symptoms, side-effects, and complications of the disease. I found it to be a fabulous reference as new symptoms popped up.
3) Lupus would affect every aspect of my life for the foreseeable future: No getting around this one, is there? It doesn't seem like there are many chronic illnesses that are as thorough as lupus. The physical and emotional, lifestyle at home and at work, inner turmoil and outward appearance - the disease leaves no stone unturned. And yet, if I'd known that adjustments were going to be necessary, and if I'd had a blueprint for how I could make them, maybe those feelings of vulnerability and hopelessness wouldn't have been so profound. Nonetheless - now that I know - it makes the job of pro-actively making those accommodations that much easier.
Well...most of them, anyway.
Today, I'm able to embrace these issues, and manage them almost without a second thought. I know what to expect, and I have an idea of how to deal with them. Just one more reason why I wrote my book. So others wouldn't be in the dark as long as I was!