A lot of people tend to gloss over the chronic part of chronic disease, only seeing their doctor or taking their medications when they feel steamrolled by symptoms.
The problem with doing that is, by the time you’ve gotten to the point where you can’t move your joints, or you can’t think straight, or walk normally or breathe comfortably – potentially permanent damage to your body may have already been done. And with lupus, you may be in a flare for weeks before you ever start feeling it. When my kidneys started to fail, I put off the serious treatments my doctors recommended. I was scared. But, when they rolled me into the emergency room, I was so swollen with fluid that it had begun leaking into my heart and lungs, doing god knows what kind of damage. At that point any treatment sounded better letting my heart swim around in bodily goop.
Even if you’re feeling okay, or are considered “in remission”, make a regular date with your doctor to update your lab work and fill your doctor in on any changes in your symptoms or any new therapies you may want to try (this includes vitamins, diet changes and exercise plans). Sticking to a schedule can help keep the lines of communication open with your medical team and head off any potential problems before they grow into ER nightmares.