Can the New Lupus Drug Help Me?

6 years ago

This is what three rounds of injections to your spine and neck will do:

Hunchback

To add to my sexiness as of late, I am now a hunchback.

Lovely.

Of course that would be the only tale I don't know very well, so I should probably read it... or watch the Disney version. I'm guessing it didn't have anything to do with a woman on the ass-end of her 30's struggling with Lupus, did it? No... okay.

I'm also having these other awesome side effects, like muscle spasms and charlie horses almost every time I stretch anything. If I reach for something, charlie horse in my arm. If I chew, muscle spasm in my jaw. If I YAWN, charlie horse in the muscle under my chin. If I throw up from the kids' stomach flu, spasm in my chest, back, and stomach while puking.

I also have swelling from time to time that pretty much renders my ankles and feet useless. And strangles my rings onto my fingers.

And then there is the "dead" feeling in my arms and legs that just hits out of nowhere. Suddenly my arms are 500lbs and I have to hold one arm, swing it, pick up my drink, and with one arm supporting the other take sip.

Oh, and the steroids are not ONLY making my face and stomach grow (no really, it's an oddly distributed weight gain) but making hair sprout everywhere but my head. Constant tweezing, people... constant. And when that isn't enough, I bust out my husband's little scissors.

This really is no way to live. I see my doctor Monday, and that's exactly what I plan on saying. This really is no way to live.

The treatments are becoming worse than the disease.

There is hope though. The FDA has approved the first new Lupus drug in over 50 years. Maybe this one will make me skinny, my hair shiny, and my skin perfect. Or maybe it will give me horrible gas and cause my nose to bleed 24/7. Who knows.

In reading about the new drug, however, I was disturbed at some of the throwaway lines reporters were adding to their pieces such as -- "the potentially fatal Lupus" and "a 10-year survival rate for patients with Lupus is now expected."

Which makes me pet my neck. My swollen, swollen neck. And pet my belly. My swollen, swollen belly. And pet my cheeks. My swollen, swollen cheeks. And breathe. And thank modern medicine.

Social Media Strategist Erin Kotecki Vest

Original for BlogHer

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