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Trapped and Lost, a Lupus Patient Makes a Radical Call

I’ll never forget the day my family moved from Long Island, New York to Fort Lauderdale, Florida when I was a child. Sunshine, sandy beaches, and just about every outdoor sport and activity at your fingertips all year long – it seemed like paradise. But as I grew into a teenager and young adult, being in the sun started to not sit well with my body. A weird rash would rear its head within a few hours, fatigue, sores, and other strange flu-like symptoms. My family and I always brushed it off as “too much sun,” and anyone who has graced the beaches of Fort Lauderdale knows the intensity of the sun’s rays in that area.

But when I was unexpectedly diagnosed with Lupus at the age of 23, the photosensitivity made complete sense.

Up to 70% of lupus patients deal with some sort of photosensitivity, meaning their symptoms get worse or are brought on by UV rays and/or heat. Today, just five to ten minutes in moderate sunlight can knock me down for days. I also learned any UV ray can set off a lupus flare, even certain types of indoor lighting.

As the years progressed, and my disease activity worsened, I tried so hard to stay out of the sun – almost an impossibility when living in South Florida. Suddenly, I became a prisoner in my own home, not able to enjoy outdoor activities or even a walk with my husband until after 7 or 8 p.m. And photosensitivity wasn’t the only Lupus symptom I was dealing with. In addition to symptoms from sunlight, I was also dealing with fevers, mini-strokes, blood involvement, and a brain aneurysm. The Lupus became so severe at one point, I became wheelchair bound and couldn’t leave my house for months. Sunshine, people, outdoors and life, in general, bustled around me and I felt trapped.

It was around this time that my husband convinced me to take a road trip north to New York  (where we were both born). Fall season had just started and the weather was cooling off; we thought it may be an ideal time to go as the heat and sun wouldn’t be intense.

Little did I know, it would be a life-changing trip.

We spent three weeks in our home state, visiting family and friends, and doing a good amount of exploring. And then we came to a revelation. I hadn’t had nearly as many fevers, wasn’t as fatigued, and wasn’t taking as much medicine as usual. The main difference we noticed was the weather. We hit a cold front while on our trip and most days were overcast and in the 40s. Though some Lupus patients actually feel better in the heat, it seemed the cold weather worked wonders for my body.

And then we did the unthinkable – packed up our entire life and moved back to New York six weeks later, not too far from Niagara Falls. The winters are brutal…and to be honest, I love every minute of them. The love affair between me and the cold weather is still going strong almost six years later. Of course, I do love the sunshine of summer and hiking near local waterfalls. But I have something in my “toolkit” now that I didn’t have 17 years ago when I was diagnosed – Coolibar clothing.

I remember the first time I heard about Coolibar and thought, can you really wear something that will protect you from the sun?  It sounded genius and perfect for people like me. Their long-sleeve t-shirts, rash guard, and wide-brimmed hats are my favorites and all perfect attire for somewhat sunny days here in Western New York.

I still have my ups and downs with lupus. Typically, I get IV treatments almost weekly at a nearby hospital, but the disease hasn’t broken my adventurous spirit and love for life. On my good days, I enjoy yoga, cooking, and creating the perfect recipe and food photo for my job as a food and health journalist. My husband, our rescue dog and I still love road trips and exploring – except now we venture to the coldest places possible. Two recent adventures have been Alaska and Nova Scotia (both gorgeous)… and you better believe my arsenal of Coolibar comes with me every time!

If you or someone you know has lupus, I’d love for you to come join us at LupusChick.com, a nonprofit autoimmune community I started 10 years ago. There we talk about every subject you can think of when it comes to chronic illness!

See you there.

XO Marisa

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