1. Think of your doctor as a less hilarious version of your best friend. And at your appointment, it’s time to tell all. Sure, symptoms can be embarrassing. But your doctor knowing that you forgot your ATM pin (again) or you have a rash in a place you’d prefer not to mention could be critical to you getting the best care.
2. Speaking of your BFF, bring her with you. Or your husband or mom or your aggressive assertive next door neighbor. Having someone else listen and ask questions can mean less pressure on you.
3. Write it down. Did your doc give you new info or instructions in your appointment? Write it down. Did a new symptom pop up? Write it down. You can’t remember your ATM pin. Believe me when I say, you’re not going to remember this either.
4. Own your behavior and choices. If there are three pills left in the bottle, you did not finish that course of prednisone. Starting an exercise program tomorrow does not count as a “yes” to your doctor’s “are you getting exercise” question. Lupus requires that you take a hard look at all aspects of your life. If you feel rotten, are you getting enough rest? If you feel good, what have you been doing right?
5. Your doctor gets to decide what information is irrelevant. Lupus is super-complex. Let your doc decide which symptoms he cares about. Over the course of years (and yes, you’ll be seeing your doctor for many, many years), patterns emerge. The more you and your doc understand about your lupus, the better you’ll be able to manage your symptoms.
6. It’s on you to address your concerns. Remember, no matter how caring your doctor is, she is not thinking about your problems after your appointment. So don’t leave the office until you’re satisfied with the info you received. This is your body, and you’re the only one who lives in it. Get the answers you need to feel better.
7. Remember that lupus baffles elite medical minds. It’s okay if you’re confused, too.
By Carie Sherman
Have you had your vitamin D levels checked recently? If not–you should.
Last summer, I learned I was severely D-deficient. And recent blood-work confirmed that because of supplementation, I’m deficient no more. (I count it as one of the reasons I say “better” when someone asks how I feel.)
Why is this vitamin so important for lupus patients? To start, there are studies that indicate a link.
Low vitamin D levels might have some bearing on the development and severity of lupus.
Our D levels are low because those of us with photosensitivity avoid the sun (vitamin D is “sunshine vitamin”).
The drugs we take (steroids and hydrochloroquine) might interfere with vitamin D levels.
SLE patients who receive supplementation may experience less disease activity.
Lupus or not, researchers estimate that 1 billion people worldwide lack proper D-levels.
What’s the Big Deal about D?
This is so cool: The Mayo Clinic outlines what the science says about vitamin D, breaking down each piece of evidence and grading the science behind it. Not surprisingly, nearly every autoimmune condition listed is given a “C,” indicating more research is necessary (support lupus research and Lupus Colorado!).
The “A” list includes:
- Bone disease: softening, weakening
- Kidney disease Psoriasis
- Thyroid conditions
- Lung disorders
- Stomach and intestine problems
- Heart disease
The evidence isn’t fully in on these items, but there are also some indications that improved vitamin D levels could lessen joint pain, lower risks of certain kinds of cancer, improve brain function and improve blood pressure.
Could You Be Vitamin D Deficient?
You might be at risk if…
You don’t have much sun exposure (true of most lupus patients!).
You have dark skin.
You have kidney dysfunction.
You are obese.
You don’t eat meat or dairy.
Your digestive system isn’t functioning well, as in celiac disease or Crohn’s.
There’s only one way to know for sure: Ask your doc for a blood test (she’s taking so much already, what’s another test, right?). If your levels are low, treatment is as simple as taking a pill.
I saw my energy go up and my pain levels go down soon after treatment. You’re already seeing your doc, so I think it’s worth asking about.
Do you ever wonder about the type of person who might be taken over by a cult?
Me too. And I bet it’s someone like me.
I’m a searcher. I’m always looking for mechanisms for improvement. When the Tony Robbins and Zig Ziglars and Deepak Chopras of the world sleep, they dream of my face, emerging from beneath a halo of dollar signs.
I hide my addiction in a bookcase that rivals any self-help section in a big box bookstore. Even my followers on Pinterest–a treasure trove of inspirational gold–remain unaware since the advent of the “secret” board.
So what got my attention this morning? A little nugget that shined brighter than all the rest:
By Carie Sherman
I spend a lot of time with doctors.
For more than a decade, I have written for physicians and count many as clients. In fact, earning the respect of my physician clients has been one of my greatest achievements as a writer.
And like any good lupus patient, I spend my free time in waiting rooms—a primo place for people watching that delights the writer in me.
It’s easy to recognize the regulars. They smile. They look relaxed. They knit, read, play video games, stare unapologetically and take notes (okay, maybe that’s just me). But newbies are far more fun to watch.
While I’m usually entertained by a freaking out newbie, a lady yesterday infuriated me. What began as some serious huffing and puffing ended with a fist pounding on the reception desk and followed by a…
“If I treated my clients this way, I’d blah, blah <explicative> blah…!”
She went on…
“Overpaid < explicative >, lazy, they’re the reason health care in America sucks…”
Her tirade ended with a resounding…
And to my relief, and that of my waiting room peeps, she exited the building.