The Chronic

The Chronic

I’ve been thinking  a lot more about what it means for me to have lupus lately because of a friend’s recent diagnosis. (we went to the same grade school AND high school – what are the odds? Big ups to KH) I have to say it’s like reliving being diagnosed. In a good way. From a far away place with less intensity. But I find myself thinking about K all the time, which in turn, makes me think about myself 5 years ago and how I felt, physically and emotionally. I really think my horrible memory is trying to take care of me by not serving me up detailed reminders like I think I want. I am glad to have really foggy memories of how I felt back then. I don’t know how I got through it. I just did.

I liked this quote from the book "Strong at the Broken Places":

“Chronic conditions do not resolve themselves. Unlike terminal illness, there is no high drama with these diseases. They are not sexy, and are little noticed or understood by an unknowing public that would prefer not to think about them. Those who are hit hard know the frustration of being marginalized, reduced, and pushed to the side by these chilly attitudes.”

I’ve been asked if my lupus is real. I’ve been asked if I could spare some of the meds that make me lose weight. (sure! Take them, along with losing weight rapidly you will have insane nausea, pain and fatigue, immune suppression, nose and mouth sores and hair loss. Still want some?) I’ve been asked what I did to myself to “get lupus”. (as if I picked it up at the grocery store because I forgot to wipe down the cart handle with those 409 wipes they give you at the store.)  I’ve been told I brought lupus on myself but can be cured if I just do a, b and c. Lots of ignorant comments, none were malicious I’m sure, but they still sort of stop me for a minute. And depending on the day, make me want to punch someone in the teeth.

I think more than anything, it’s the ignorance that’s most annoying.

And on that note, dear reader, I ask this of you. Educate yourself and even if you just tell one person what lupus is, then consider your job done. www.lupus.org has lots of good info. Also, read this essay if you have a minute. (its a pdf and I know I’ve posted it before) It’s a good description of what life is like sometimes from a woman who runs a site called “But You Don’t Look Sick” dot com. www.butyoudontlooksick.com

Aptly named. I hear that all the time.

 The lupus walk is this weekend here in Denver on June 14. I have a donation page if you want to fork over some dough. My goal is $100 so it’s not like I’m asking for an organ. More than anything I just want to make people aware.

It’s real. It sucks. The FDA has not approved a new medication to treat lupus in 50 years. That’s a long time. And the meds currently prescribed for lupus have unacceptable side effects that are life-diminishing and may actually cause other health problems worse than lupus itself. Side effects like bone loss and osteoporosis, infertility, infections, joint replacements, cancer, and more.

Fun.

Currently, I’m exhausted, have neosporin shoved up my nose to dull the pain of a new nose sore and could sleep for 3 days straight. Every day is different. So. Annoying. I’m thinking today this is my body’s reaction to me going out to dinner last night with some girls and having the audacity to have 2 margaritas and get to bed at 10:30.  Who knows though? Lupus is one bipolar, unpredictable bitch.

Not to be Debbie Downer. Just telling it like it is.

XOXO

Emily

PS- Have you seen The Hangover yet? What are you waiting for??? You. Must. Go. Now.