2012-09-21 / Community

Neighbors

Disease drastically changes South Portland 20-something’s life
By Jack Flagler
Staff Writer


Crystal Goodwin Crystal Goodwin In a little more than a year, Crystal Goodwin’s life has been turned upside down.

Last year, she was working at the Opportunity Alliance Family Center in South Portland. She put in 50 or 60 hours a week to help children who have mental illnesses. She was going to school part time as well to pursue her goal of opening her own practice as a psychiatric nurse practitioner, and she was taking care of her grandmother, Freda Sampson, at Sampson’s home on Columbus Avenue.

“That’s the type of person I am. I like being busy, I like doing things. On the weekends I liked to travel. I was always busy, I was always doing something,” Goodwin said.

Then, the visits to the emergency room started. Doctors thought Goodwin was having an allergic reaction when she came in with hives, a swollen tongue, difficulty breathing, fainting, burning in her extremities and fatigue.

But there was seemingly no pattern to what triggered the reactions. Once, Goodwin said, she had to go to the ER after drinking Gatorade. Another time she suffered from the symptoms after simply walking into work.

Now, a year later, doctors are still working to find out exactly what is wrong with Goodwin, 27, who lives in South Portland.

“Some doctors explain it and say you’re not allergic to these things, they just trigger (the reaction). Other doctors will say there’s nothing that triggers it, that’s just the time your body decided to eat the cells,” Goodwin said.

Doctors do know she is suffering from an autoimmune disease that attacks the mast cells in her body. And if there is a problem with the mast cells, that leads to intestinal issues, which means Goodwin has to stay on an incredibly restrictive diet.

Mast cells are responsible for releasing histamines that respond to allergic reactions.

Goodwin has lost 50 pounds over the past year. She can only drink water and avoids dairy, gluten, tree nuts and histamines (meaning everything has to be organic and cooked fresh – no leftovers). That limits her, essentially, to a diet that consists of salads and organic, freshly prepared chicken.

Meanwhile, Goodwin is on 22 different medications. She has 12 doctors between Maine and specialists in Boston. She is constantly fatigued and she has to avoid sunlight or go outside completely covered to avoid a reaction.

“I feel like I’m not even living my life any more,” Goodwin said.

Until the symptoms of her autoimmune disease surfaced last year, Goodwin was in almost-perfect health, save for mild asthma and seasonal allergies.

Despite the debilitating and frustrating condition, Goodwin said she has found a silver lining in the complete change she’s experienced in her life.

“I think I’m sick for a reason, and I think it’s teaching me a lot about my life. I’m more spiritual than I was before, I’m looking at all avenues,” Goodwin said.

Before the disease set in, Goodwin said she was the type of person who was always on the go and never would take time to relax. She never took ideas such as a vegan diet, shamanism or homeopathy seriously, but the disease has forced her to become a much more open-minded person.

“We think we can just go to a doctor, they’ll tell us what’s wrong and we’ll be fixed tomorrow,” Goodwin said. But that mindset changed for her during one visit to the ER, when a technician told her modern medicine was failing her.

That doesn’t mean Goodwin has moved away from looking for a solution through modern medicine, but it has changed her state of mind.

“It’s really taught me to just relax and take things as they come, and be in tune with how I’m feeling,” Goodwin said.

Her family and co-workers at Opportunity Alliance have provided an important source of support, Goodwin said, during this trying period. She said coworkers frequently call to check in and even let her hold a few bake sales at the offices on Lydia Lane in South Portland.

But the bake sales alone can’t cover the rising medical costs that have piled up over the course of the year, as frequent visits to the ER and doctors’ offices mount. Goodwin said she has four doctors’ visits scheduled for next week alone. Her COBRA medical coverage takes care of 30 percent of those costs, but Goodwin said she is responsible for co-pays for doctor’s visits and medications and she has to foot the bill to take care of her dietary needs.

Goodwin’s friends and family have set up two web pages to allow people to donate to help her through her illness. Updates are posted at Facebook.com/CrystalsOpportunity, and people can donate at CrystalsOpportunity.ChipIn.com/Crystals-Opportunity.

There will also be a fund-raising event On Saturday, Nov. 3 at Skip’s in Hollis, which will feature a live band, games, door prizes and raffles.

About Neighbors

Neighbors is a weekly profile that features a community member from South Portland or Cape Elizabeth. Know someone you would like to see featured in the Sentry? Contact Jack Flagler at news@inthesentry.com.

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