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Together We Will… Educate to Self-Advocate

Sara Gorman was healthy. She visited her doctor once a year for an annual check-up. She had a career she loved in television and had just married the love of her life. Then, six weeks later she was diagnosed with systemic lupus at the age of 26. Overnight her very new husband changed from being her partner to her caretaker. For the first few years, Sara dealt with her illness by fighting it. She held onto her career and did everything she could to maintain life as she knew it. As a result, she developed further heart and lung complications, kidney problems, and lost her hair a number of times.

“Lupus infiltrated my life so unexpectedly that I had no idea what to do. When you’re healthy, the concept of a chronic illness is completely foreign. It took me two to three years to wrap my head around the fact that this wasn’t going to go away with a Z-Pack. I was going to have to embrace it and start accommodating for it.”

With her diagnosis, she was given a number of reading materials and advice to prepare her for what to expect. Mainly depression, fear, anxiety, exhaustion…the list goes on. But Sara was still young. She wanted to get out, be active, but with Lupus, she even needed to embrace a new relationship with the sun. What she really needed was information on how to live with lupus and more importantly, live well. This realization was a turning point and the beginning of her career as an author, blogger and designer.

In order to truly live with lupus, Sara needed a blueprint; a positive approach to managing the disease. She chartered a new plan for herself and turned it into the book “Despite Lupus: How to Live Well with a Chronic Illness”. She addressed the mistakes she made in denying her disease in her first few years and explained how people and their support teams can respond to their diagnosis in a positive and healthy way. When life hands you lemons, you make lemonade and share it with everyone!

“When I first went on tour to share the book readers would say things like, ‘gosh, I could have written pages 12 to 15 myself!’ Others have handed the book to family and friends to help them understand their life with lupus. When you have a chronic illness, it can be hard to find your voice and share what you’re experiencing with others. Helping people overcome that and be positive about it means so much to me.”

The key to living well is not only Sara’s positive “can do” approach, but also understanding her needs and sharing them with her support team. You need to be your own patient advocate. She learned to say “no” in order to care for herself. When she says no, it’s not about putting her life on hold to care for herself. It’s all about caring for herself so life can continue. This can be a tough idea to embrace, especially for working mothers. Luckily, her husband has been there since her diagnosis. Her daughters, now eight and 10 years old, have grown up with a mother with lupus.

“I am who I am and I’m better when I’m healthy and happy. My kids understand that having a healthy mom means letting me rest. If I need to take a nap instead of going to a softball game out in the sun, they fully embrace it and support me. They even go so far as to make sure I’m protecting myself, like wearing skin protective clothing and a sun hat outside. Watching them grow up with empathy and compassion for their mother and others is wonderful. My illness might slow me down, but I will not judge myself for going at my own pace in my professional or personal life. It’s what I need to do to live well.”

To learn more about Sara’s journey with lupus, her workshops, book or one-of-a-kind pill cases, you can visit her blog Despite Lupus or website Pillfold. Five percent of all purchases are donated to various organizations that are promoting awareness, or doing something to improve the lives of lupus patients.

Sara will also be the keynote speaker on October 27th for the 18th Annual North Carolina Lupus Summit.

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Skin Diaries

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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Inside Coolibar Sun Protection Clothing

Fit to Wear Coolibar

Lupus Foundation of Minnesota Ambassador Chris Cronick spends a lot of time outdoors, teaching spin classes at the gym and traveling around the community to raise awareness for lupus along with her husband Patrick. Coolibar provided them with a few items to test during their busy month. Chris shares their thoughts on fit and function.

Coolibar is an awesome sun protective clothing line for those with lupus (like me) because we need UV protection, yet want fashion and comfort. My husband Patrick and I had the opportunity to try some fantastic items throughout the past couple of months.

I don’t know about you, but when I shop, I’m always curious to know the size and measurements of the model so I can visualize how it may fit on me. I’ve included some pictures so you can see how Coolibar fits on real people. I’m 5’8” and about 130 pounds. I wear extra small and small sizes.

Chris (pictured middle) wearing the Coolibar Vera Resort T-Shirt

One of my favorite Coolibar items is the Vera Resort T-Shirt (size small). I love this shirt so much that I now have it in Fig and Turkish Blue! It didn’t cling around my waist and was longer for my arms, providing great coverage. It’s the softest (almost silky) long sleeved shirt I have ever owned. I’m all about layering, especially living in Minnesota. This shirt can be worn alone or perfectly layered underneath a short-sleeved t-shirt, under a button-down shirt, a light jacket or vest. In fact, I thought it would make a great Christmas gift so I’m getting a couple more for my family!

I sported the Vera Resort T-Shirt, along with the Fitness Jacket in White/Iron at the most recent Twin Cities Lupus Walk for Hope event. There’s reflective piping which makes this the go-to jacket for walking the dog at night (picture upper left). There’s a zippered pocket perfectly situated on the front chest. I found this to be a nice, handy home for my cell phone. I also like the wrist cuffs which double as gloves. How ingenious is that? This lightweight, breathable jacket provides all the sun protection I’ve come to know with Coolibar with the same fitness savvy details you find in more expensive brands.

Chris and Patrick

_ I also wore the black ZnO Long Sleeve T-Shirt for the Lupus Walk for Hope in Duluth, MN. I like this T-shirt because it has a sturdier cotton/spandex construction perfect for a cooler yet sunny day. Again, the ZnO is another great layering staple. I needed to be comfortable for the two-plus hour ride to Duluth, so I wore the ZnO Long Sleeve T-shirt paired with the ZnO Beach Pants. I like to be comfortable when I travel but still feel put-together. As you can see, these beach pants are also great for doing the elliptical at the gym too! You can wear them for virtually anything. They really are an everyday pant, not just for the beach.

Chris wearing ZnO Beach Pants on elliptical

My husband Patrick does not have lupus but has very fair skin and burns easily. I encouraged him to try Coolibar as well, so he wore a few pieces to each walk. To give you an idea of his stature, he is 6’1”, about 220 pounds and mostly wears extra-large. He is tall with broad shoulders and long arms. He finds Coolibar fits his frame perfectly with a little extra “give” where he needs it. He really liked the Men’s Fitness Jacket in Limelight/Iron and the XL fit him great. The sporty colors combined with the functionality and design of the jacket made it perfect for layering up or down. There is a zippered pocket on the sleeve that conveniently held his cell phone and zippered pockets on the front that held our car keys and some money. Lightweight, breathable 3D dri SUNTECT® fabric makes this jacket sun-protective and the surface grid wicks moisture for quick-dry performance. He wears this to the gym all of the time.

I welcome any comments or questions you may have about the items I mentioned. I also want to extend my gratitude to the wonderful people of Coolibar and the Lupus Foundation of Minnesota who opened my eyes to sun protection clothing. I wish you all the very best of health!

LFM Ambassador Chris Cronick received free sun protective product for the purpose of this review.

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Wellness Warriors

An Ambassador for Lupus

Chris Cronick, the 2013 Lupus Foundation of Minnesota Ambassador, is a role model for us all. A fitness coach, spin instructor and motivational speaker, Chris has triumphed over some major health obstacles, and still maintains a positive attitude.

Hi, my name is Chris Cronick. I am sharing my story, raising awareness of lupus, and kicking-off this year’s Lupus Walk for Hope & 5K Saturday September 14th, at French Regional Park in Plymouth, MN.

I’m 38, and I have rheumatoid arthritis and celiac disease, both of which are autoimmune diseases. I’m also the proud recipient of six artificial joints. Apparently I wasn’t quite finished adding on to my list of ailments because back in 2010, I suddenly became very sick and spent six months in and out of different hospitals. Many tests were done and finally, I was given a diagnosis of lupus.

Your body’s immune system is designed to protect you from disease and infection. If you have an autoimmune disease, your immune system mistakenly attacks healthy cells in your body. Lupus is an autoimmune disease that affects many parts of a person’s body including: kidneys, heart, lungs, brain, blood and the largest organ of the body, the skin. Those of us with lupus MUST stay out of the sun or we risk a flare. A flare is a period of heightened disease activity which can range from mild to very severe, requiring hospitalization.

Case in point: Back in September of 2011, just one year after I was diagnosed with lupus, I learned my heart valves were damaged from a lupus related infection for which I would need open heart surgery. That is how crazy lupus can be. Fortunately, I was able to make a recovery that is nothing short of miraculous because now, I am a Motivational Speaker, Fitness Coach and Spin Instructor. You can learn more of my journey at: http://chrisinspires.com/.

Health and wellness are true passions for me and I do everything in my power to stay strong and healthy. I’m super excited to finally feel well enough to volunteer and raise awareness for this life altering disease which is what lead me to the Lupus Foundation of Minnesota. LFM has been a tremendous support to me in many ways and a partner in my journey. In fact, while there, I was first introduced to Coolibar and it’s literally been a life-saver. I had no idea a company like this existed.

Prior to lupus, I was on several medications for rheumatoid arthritis that made me highly photosensitive. If I were out in the sun, I could burn more quickly and more intensely. Now that I have lupus, not only am I still on those same photosensitive medications, I must avoid the sun altogether to avert flares. Yes, it’s a double whammy but staying out of the sun is one way I can manage this disease. With that said, it’s not always so easy.

I’m fairly young and active, even though my body sometimes makes me think otherwise. If I’m feeling good on a beautiful summer day, I’d rather not sit inside for fear of a flare–especially because I live in Minnesota and we only have a three-month long summer! I want to get out there and enjoy the weather. Contrary to those who think we have snow year round, it gets very hot and humid here and to be outdoors in a traditional hoodie or long-sleeve shirt can be miserable. I’ve had the hardest time finding light-weight, comfortable, and fashionable clothes for outside until I discovered Coolibar. To know Coolibar is blocking 98% or greater of both UVA and UVB rays, and the clothes are also cool, is a bonus.

Coolibar has fast become a staple in my wardrobe. The fit, the feel and the function – I can’t wait to share my favorites with you all! I will be sporting some at our upcoming Lupus Walk for Hope & 5K next weekend. If you’re in Minnesota, join us for the Lupus Walk for Hope in any of these three areas.

Twin Cities (September 14); Rochester (September 28); or Duluth (October 5)

More to come soon.

-Chris Cronick

Learn more about the Lupus Foundation of Minnesota.

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Wear Sun Protection What our customers say

I’m African-American and Sun Safe

Coolibar was introduced to mom blogger Quiana Agbai of Harlem Love Birds this spring at Getting Gorgeous, an event dedicated to making mom’s feel gorgeous, both inside and out. Quiana learned all about Coolibar Sun Protection You Wear and needless to say, we had a lengthy conversation about the importance of sun protection for all skin types. Mrs. Harlem Love Bird shares her thoughts with us.

Review by Quiana Agbai, Blogger, Harlem Love Birds

As an African-American one of the biggest myths is that we don’t need to wear sunscreen because of the melanin in our skin. This is far from the truth, especially in light of the recent study about prolonged use of sunscreen preventing skin aging. Although the subjects weren’t African-American, it was speculated that outstanding results would have been achieved as well.

While I’ve used sunscreen off-and-on throughout my childhood and now as an adult every single day, especially with my diagnosis of discoid lupus in 2007, it’s been important more than ever to practice being sun safe.

With that in mind when I was introduced to Coolibar at Getting Gorgeous blogger event last month, I knew it was a brand I wanted to learn more about. Sure enough, Coolibar partners with the Lupus Foundation of America to provide education about the importance of maintaining sun safe habits.

The Coolibar Sun Beach Hat I’m wearing (picture left) was included in my Getting Gorgeous gift bag. It’s been a mainstay when I’m out and about especially for prolonged play-dates at the park and pool. Every time I wear it I get stopped by people wanting to know where it’s from.

I’ve noticed my Sun Beach Hat really does keep me cool and because my scalp is most affected by discoid lupus it provides outstanding coverage. It also has an adjustable loop inside to adjust the fit; since the brim is so large I’ve had a few times when it blows away like a sail so making sure the fit is correct is important! It also folds up nicely but retains its shape and structure when unfolded – no floppy hat syndrome.

Guest blogger Quiana Agbai received free sun protective product for the purpose of this review. All opinions are her own.

Quiana and daughter Nia

Shop Coolibar UPF 50+ Clothing, Hats and Swimwear.

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Events SunAWARE

Living with Lupus

While sun protection is important for everyone, many individuals who have medical conditions are threatened with worsening symptoms when exposed to the sun. Lupus is a chronic autoimmune disease that affects approximately 1.5 million Americans. It also causes extreme sun sensitivity.

While most of those affected only have a mild form of lupus, others may develop serious and even life threatening problems. Joints, blood cells and organs can all be affected by this disease. Our friends at The Lupus Foundation of Minnesota (LFM) estimate that more than 90% of people living with lupus are women, and that symptoms and diagnoses occur most often when women are in their child bearing years between the ages 15 to 45.

There are three common types of lupus: discoid (cutaneous) lupus, which is always limited to the skin; systemic lupus, which can affect every organ in the body; and drug-induced lupus which occurs after the use of certain drugs. Lupus also occurs frequently in individual diagnosed with mixed connective tissue.

According to the LFM, for the vast majority of people with lupus, effective treatment can minimize lupus symptoms, reduce inflammation, and maintain normal body functions. Photosensitivity is a major feature of both systemic lupus and cutaneous lupus. Exposure to the sun can cause skin lesions, including a malar rash — flattened areas of red skin on the face. When the rash appears on both cheeks and across the bridge of the nose in the shape of a butterfly, it is known as the “butterfly rash.” UV exposure can also trigger flares of internal disease (including joint pains and fatigue). Medications are often prescribed for people with lupus, depending on which organs are involved, and the severity of involvement. Many lupus medications (including tetracycline antibiotics) significantly increase sun sensitivity.

Because the characteristics and course of lupus may vary significantly among individuals, it is important to emphasize that a thorough medical evaluation and ongoing medical supervision are essential to ensure proper diagnosis and treatment.

The Lupus Foundation of Minnesota is an independent organization that focuses on funding lupus research and serving those in Minnesota and neighboring states. As a non-profit charitable organization, LFM provides education, support and service to those affected by lupus, promotes awareness and understanding of lupus to others, and supports research that seeks to improve the diagnosis and treatment of lupus as well as to discover its cause and cure. Learn more about events during Lupus Awareness Month this May by visiting the Lupus Foundation of Minnesota’s website.

At Coolibar, we create clothing that offers the best sun protection possible for individuals living with lupus. We hope that by raising awareness of this disease and other diseases directly affected by the sun’s ultraviolet radiation, we can create greater support for affected individuals and organizations like the Lupus Foundation of Minnesota.

Don’t live in Minnesota, but want more information or assistance? The Lupus Foundation of America also provides support for individuals living with lupus.

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Inside Coolibar

Coolibar Community Outreach

As we swing into fall we would like to take a moment to reflect on the previous year and acknowledge those who are educating our communities on skin cancer prevention, detection and treatment. During 2011 Coolibar was able to support both individuals and organizations through the donation of UPF 50+ Coolibar clothing, hats and swimwear. Read on for a list of those inspirational groups and what they do.

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Organizations Coolibar Supports (listed alphabetically)

AIM at Melanoma
AIM is committed to melanoma research, education, awareness, and legislation.  They offer a melanoma community for patients, caregivers, and advocates; and collaborate with top melanoma researchers to find the CURE!

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American Academy of Dermatology
The AAD is the most representative of all dermatologic associations. The Academy is committed to: advancing the diagnosis and medical, surgical and cosmetic treatment of the skin, hair and nails; advocating high standards in clinical practice, education, and research in dermatology; and supporting and enhancing patient care for a lifetime of healthier skin, hair and nails.

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Andy Caress Melanoma Foundation
The mission of The Andy Caress Melanoma Foundation is to alert the world of the seriousness of melanoma skin cancer and the dangers of the sun’s harmful rays, and to educate all human beings that melanoma does not just affect the fair skinned, rather all colors and races.

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Children’s Melanoma Prevention Foundation
The CMPF delivers a comprehensive sun safety and melanoma awareness program, free of charge, to school children in Massachusetts with the goal of expanding nationally. The CMPF was created to aggressively focus attention on the need to teach “prevention” or “sun protection” to children, and their caregivers.

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Dermatology Nurses’ Association
The DNA is a professional nursing organization comprised of a diverse group of individuals committed to quality care through sharing knowledge and expertise. The DNA promotes excellence in dermatologic care.

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Melanoma Research Foundation
The Melanoma Research Foundation (MRF) is the largest independent, national organization devoted to melanoma in the United States. Committed to the support of medical research in finding effective treatments and eventually a cure for melanoma, the MRF also educates patients and physicians about prevention, diagnosis and the treatment of melanoma. ________________________________________________________________________________

Skin Cancer Foundation
The Skin Cancer Foundation is the only global organization solely devoted to the prevention, detection and treatment of skin cancer.  The mission of the Foundation is to decrease the incidence of skin cancer through public and professional education and research.

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Stay Out of the Sun Foundation
The Stay Out of the Sun Foundation was established in 2006 by melanoma survivor Tim Burriss to promote awareness of the dangers of sun exposure and to support melanoma research and education. Based out of Rochester, MN the annual race (which is held in the evening) benefits Melanoma Research at the Mayo Clinic where researches are committed to finding a cure.

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SunAWARE
SunAWARE is an educational organization dedicated to the prevention and detection of skin cancer. Its website provides advice and free educational materials and resources for use by educators, advocates and the general public.

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