Deb Miller gets weird looks parking in the handicap spot.

She says she looks normal on the outside. Inside, every joint feels like it’s on fire.

The 38-year-old West Des Moines woman is diagnosed with Ehlers Danlos syndrome, a connective tissue disorder.

She thought she was just “double jointed” as a kid. Endless bouts of pain so sharp and overwhelming throughout her 20s caused her to seek a diagnosis at age 30.

“I just suffered a long time not knowing it wasn’t normal,” she said.

She’s done the gamut of pain meds — tramadol, hydrocodone, oxycodone, fentanyl. The narcotics intensify a feeling of “brain fog.”

For a former high school track star who once ran three weeks on a broken ankle, Miller has a very high pain tolerance. But she couldn’t stay off her narcotic pain medication long enough so that she and her husband, Craig, could have a baby.

“The pain was too overwhelming,” she said.

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Miller learned about medical marijuana at an Elders-Danlos National Foundation conference two years ago, and she was moved to tears by one patient’s story.

“Her story sounded a lot like mine,” Miller said. “After the first time she tried it, she got her life back again. I cried through the whole thing. I’m not able to have the same options people in other states do.”

Miller, a “proud Iowan” with her parents still living here, says she can’t easily pick up and move, nor can she afford to. As doctors continue to up her pain meds, she’s scared to think what she’ll do for pain relief when she’s 68.

“Right now, I feel like a prisoner to the disease,” she said. “This is where it gets emotional. I’m not living life, just existing. Every day, I deal with too much pain to deal with going out and doing the things people my age can do.”

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