Just Diagnosed? What I Wish I Was Told…

P question

Lupus can leave you with a lot of questions. (Photo credit: Wikipedia)

I first heard the word “lupus” back in the late ’90’s. It was my senior year of high school and along with worrying about prom and graduation, I was also trying to figure why my hair was suddenly falling out. Having had frequent arthritis through my teens, I was already seeing a rhuemtaologist and, a few tests, later, she broke out the “L” word. The diagnosis wasn’t official, however. My blood levels being in the “borderline” area, I received no treatment and was told to simply follow up for monitoring. Within a year, I was hospitalized as all bodily hell broke loose.

I don’t remember being told much about what lupus was, or how it would affect my life. My mother became obsessed with finding some cause – did I spend too much time in the sun? Was it some lurking genetic time bomb, some stray strand of defective DNA from some ancient ancestor? Why didn’t anyone else in my family have it? Where did it come from? Me…well I had started college and was more concerned about other things.

I learned as I went and turned out pretty okay from all the experience. Still, if I could go back and talk to my younger self, there are definitely a few tips I would have passed on.

  1. Don’t panic! According to medscape.com, the survival rate for lupus patients has exploded from less than 50% over 5 years (in 1955) to 80% over 15 years (ain’t modernity grand?). We’re not in the 50’s, research is booming and your odds are pretty darn good, so don’t start writing your obituary just yet, okay?
  2. Start a health plan now! Evaluate your eating habits and exercise routine and create ways to improve them. Trust me, it’ll be easier to start doing these things now rather than after 10 years of medication. If you’re a total couch potato or in a lot of pain, start off gently and slow – but start. The healthier you are at the start of your lupus treatments, the better your body can handle anything that comes down the pipe.
  3. Assemble your team! You’ll need a rhumatologist to start off with, plus any specialists for any chronic problems that might come later, such as pain management, a kidney doctor, etc. Other helpful resources can a physical therapist or massage therapist, a dietician or nutritionist, etc. Get a directory from your insurance and call around – don’t be afraid to grill the docs on how much lupus experience they have. If you don’t have insurance, see if you qualify for special government aid or look for alternative options.
  4. Start your medical journal. Even if it’s a bunch of post-it notes stuck inside a notebook, keep track of when you feel your worst, your best, what your most common symptoms are and any questions for your doctor. A record will help you pin down any trends and triggers that can help you and your team make smarter treatment decisions.
  5. And remember: Change is not a dirty word. Don’t waste your energy bemoaning all the things that you think you can’t do anymore. Seriously, what good does that do you? Instead, take each change as an opportunity to do something daring, different, vital and exciting. Make a life that fits your needs, not the other way around. You can have lupus and be awesome. You’ll be in a great company.

Break out the time machine and post below what you would tell your past self about living with lupus

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