4 posts in the category “lupus”

Bright ideas: Members share 7 head-to-toe tips for sun safety with lupus

Posted June 9th, 2017 by

With summer just around the bend, we’ve rounded up PatientsLikeMe members’ sun-safety and photosensitivity tips for people living with lupus. Photosensitivity is increased sensitivity to sunlight and other sources of ultraviolet (UV) light, sometimes causing a rash or other skin reaction.

On PatientsLikeMe, thousands of people with lupus say they’ve experienced photosensitivity – more than half of them reporting it’s “moderate” or “severe.” Here are a few ways members are coping with it…

Lupus photosensitivityLupus Photosensitivity

Even more tips

“I’ve found it most effective to switch to a moisturizer and makeup with added sun protection. I also keep a floppy hat hanging by the front door for yard work.” – LilliGirl

“I have invested in several neutral, long sleeve jackets. They help by covering my arms but are athletic/highly breathable and actually keep me cooler than allowing the sun to beat down on my skin ever would.” – LilliGirl

“I find I can slowly build up a bit of ‘tolerance’ by sitting out in my garden. I start by doing 5-10 minutes for a few weeks and slowly build it to 30-40 minutes eventually.” – FABWHEELIE

Reminder: Not all sunscreens are created equal. Dermatologists recommend using sunscreens that contain the ingredient Mexoryl (which offers the best coverage, blocking UVA-1, UVA-2 and UVB rays) or Helioplex (which blocks UVA-1 and UVA-2). Also, apply sunscreen 30 minutes before heading outdoors to ensure it’s absorbed, and wear sunscreen even on overcast days, which also bring UV rays.

Living with lupus and photosensitivity? Check out 56 forum posts about lupus

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Teaming up with LupusChick to boost chronic condition awareness

Posted April 4th, 2017 by

PatientsLikeMe is excited to announce a new partnership with “LupusChick,” Marisa Zeppieri-Caruana. She’s an influential blogger, advocate and advisor for the lupus and chronic condition community – and an all-around cool gal. Marisa grew up with various health issues and suffered serious injuries in April 2001 when she was run over as a pedestrian by a truck, driven by a drunken driver. During her rehabilitation, she suffered a small stroke and was also diagnosed with lupus (which can be triggered by trauma, like accidents and injuries).

Marisa launched her LupusChick blog in 2008, and it’s now a popular destination for reflections on life with chronic illness, recipes (she’s a juicer and a foodie!), wellness tips and more. She’s been featured in U.S. News & World Report, The Huffington Post, The Mighty, Eating Well, Elle, Glamour, and many other publications as a voice for people with chronic illness. She raised even more awareness of lupus when she reigned as Mrs. New York USA Universal 2015. We recently caught up with her about her experiences with lupus, her award-winning blog and her hopes for this new partnership with PatientsLikeMe.

LupusChick Interview

What inspired you to launch LupusChick? Did you expect it would reach so many people and become your day job? 

Between 2005 to 2008, I met many lupus patients and their family members or spouses through support group and awareness events and was surprised at how many of these men and women still felt alone. I believed they were looking to find a solid connection with other patients. As social media and the internet was really beginning to take off, I created LupusChick as a safe space for patients dealing with any chronic illness. It started from a small blog, reaching a few hundred people a month, to today where it is a nonprofit and major autoimmune community that reaches about 700,000 people per month. I think of it as my day/night/weekend job, as people reach out from all across the globe at all hours. It is everything I hoped it would be and more!

Could you share some of your lupus diagnosis story with us? How did you come to terms with your diagnosis after already going through so much? 

I believe my story really started when I was young, as I had health issues since I was a baby. My symptoms came out full force, though, after being struck by a truck as a pedestrian. Some autoimmune symptoms are exposed through a trigger, and that incident seemed to be my trigger. I had to heal from that event as I had extensive injuries, and got sick on top of it. I can’t say it was my finest hour, but once I got through the frustration phase, I began to see that I was still here for a reason and I needed to transform all the “bad” into something good.

What do you like to do for fun? How has lupus affected these things? 
I love to travel, meet new people and just be spontaneous. Lupus has changed a lot of those things for me but it hasn’t broken my spirit. My travel is much more planned, and I have to strategize time for rest, but it doesn’t stop me from having new adventures in life.

Which lifestyle habits or changes have helped you the most in managing lupus? How do you help others find lifestyle tips and tweaks that might work for them? 

Changes I have made included learning how to say “no” and not overextending myself. At the end of the day, I am no good to anyone else if I have run myself ragged and put myself into a flare-up.

I’ve also made a variety of changes to my diet, as I deal with lupus and many allergy and food allergy issues. These changes have helped me manage some symptoms and have made an improvement in my energy level. I am always happy to share my tips with others, but I also recommend for people to find what works for them, especially when it comes to things like diet. One suggestion I do stress for chronic illness patients is journaling. Keeping track of my symptoms, food, stress, medicines, flares, activity levels and more provided incredible insight over time as to what causes my body to flare up.

Many people on PatientsLikeMe are managing invisible chronic conditions. What is the hardest part about managing a chronic illness that other people can’t see? 

The reality is many of us are almost putting on a show, attempting to seem healthy and “normal” in order not to be judged and critiqued by others who don’t understand our illness. That in itself can be exhausting. I think if some people had a glimpse of what our lives are like on a daily basis – the fatigue, pain, doctor visits, IV treatments, medicines, needing help – they might have a different perspective on chronic illness. It might foster more compassion and, in our community, that would be incredible.

LupusChick Interview

What does a tough day look like for you?

Tough days usually include fevers, pain, rashes, heart issues and severe fatigue. It can definitely get me down because I am a total Type A who has a million things I want to do. My mind never stops, but my body puts the brakes on many of my plans. There is a level of frustration that comes along with that. I try to keep in mind a new day is coming and remind myself that I have accomplished the things I have set my mind to, even if it has taken me longer than expected. That gives me hope for future goals.

What about a great day – what does that look like? 

A great day means a lot of energy, little medicine and no IV treatment. It might look like me, my husband and our rescue dog hiking in upstate New York or kayaking on Lake Ontario. Because so much of my life seems to be me stuck in bed, I love to get outdoors whenever possible!

What are you looking forward to most in this partnership with PatientsLikeMe?  

So many things, such as connecting with like-minded people, educating others about lupus (and various illnesses) and having the incredible resources of PatientsLikeMe at our fingertips to learn what has worked for other patients dealing with similar issues!

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3 energy-saving tips for people with lupus

Posted March 31st, 2017 by

lupus fatigue tips

Fatigue can be a big deal when you have lupus. About 43 percent of PatientsLikeMe members with systemic lupus erythematosus (SLE) who are tracking fatigue as a symptom say that it’s “severe.” A rough day can feel like “walking through knee-deep water,” notes one member.

Here’s a roundup of energy-saving tips from a few different sources (spoiler alert: routines and planning ahead can help):

  1. A PatientsLikeMe member’s advice: schedule, schedule, schedule. “You can’t schedule too much with lupus because one activity can knock you out,” she says. “I learned to say no in advance to over-scheduling social engagements or things that would keep me out too late or keep me from getting enough sleep.” She also sets alarms and reminders on her phone to keep her on track, including one at 9:30 every night that says, “Time to unwind” – put away electronics, take meds and go to bed.
  1. Hint from a writer with lupus: manage your mornings. Heather Glantz, who has been living with lupus for more than 20 years, says it took her several years to nail down a morning routine that preserves energy for the rest of the day.

lupus fatigue tips

“I try to stay in bed as much as possible before I start my day, so my curling iron, mirror, brush and makeup are all in a drawer next to my bed,” she writes. She has a bench in her shower and stays seated on her bed when she gets dressed. She also avoids clothes that need ironing or have lots of buttons, zippers and buckles – every little bit of energy counts.

  1. More scheduling pointers from the experts at the Lupus Foundation of America:  
    • Balance busy times with periods of rest throughout the day, if possible.
    • Prep meals in advance, whenever you have a bit more energy.
    • Plan ahead for big events like the holidays – shop for gifts throughout the year.
    • Establish good sleep patterns. (PatientsLikeMe bonus tip: iPhones have a new “Bedtime” feature that reminds you when it’s time to hit the hay based on how many hours of sleep you’d like to get – pretty cool.)

Is fatigue a symptom you’re living with? Make sure you’re tracking it so you can see how you’re doing over time. Do you have a routine that helps you manage fatigue? Add a comment on what works for you.

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Meet Hetlena from the PatientsLikeMe Team of Advisors

Posted January 31st, 2017 by

Say hello to Hetlena (@TheLupusLiar) from the 2016-2017 Team of Advisors. We recently caught up with Hetlena and she chatted with us about some of the challenges she faces living with lupus and why she won’t let it stop her: “Putting off your aspirations, dreams, and wants due to the fear of what an illness can do means you are standing still.”

Get to know Hetlena and read on to find out how she stays positive: “After living for a while, you begin to realize that you are only given one life, so why not live it to the best of your ability.

What gives you the greatest joy and puts a smile on your face?

What doesn’t give me the greatest joy? Not much. I do my best to find joy and appreciation in everything that I am exposed to because waking up to a new day is one of the greatest joys anyone can experience. I’ve always been a morning person, so the smile comes naturally. After living for a while, you begin to realize that you are only given one life, so why not live it to the best of your ability. (…And yes, I could do much better.)

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Being diagnosed with lupus wasn’t the only problem, adjusting to the shift in what I can do and when I can do it is one of the greatest obstacles of living with this perplexing illness. There are so many days that I live in fear of being exposed of my weaknesses while trying to live up to others’ expectations. Being that I’ve willed myself to hold a full-time job while battling this disease, there are many times I secretly cower to the fact that I may not remember something, I may drop my coffee cup, lose control of my arms, or be out sick when I ‘shouldn’t’ have. I feel that society can handle a common cold, but not forever shifting sick days. Folks will say that they understand, but it’s my experience that many do not. I wish more of us —those diagnosed with lupus — were brave enough to not be coy about the unwilling position that lupus places us in. We are weakened by our feelings, our worries that others just do not understand how someone can be so well, so able at one moment of the day, then not functional the next.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

If I had to describe my condition to someone who isn’t living with it and doesn’t understand what it’s like, I’d have them first reserve a few days, maybe even a week or two, to be away from others. This is how this disease can feel, lonely, secluded, and strangely misunderstood. Lupus is an autoimmune disease in which the body’s immune system attacks normal, healthy cells and tissue. The body attacks itself. Lupus isn’t to the point where every doctor’s office has a brochure to give you when diagnosed. You’re told you have lupus, something not a lot of research has been done about, then you are asked to follow up in six weeks—if you have six weeks. This disease is scary, unpredictable, ridiculously confusing, but, thanks to many developments in the last ten years, better. How much better depends on the body. Since no two lupus patients are alike, my symptoms differ from others diagnosed. I am in constant pain. It’s continuous, yet varies at different times of the day. There are times when I’m overwhelmed with discomfort, confusion, anger, and depression. There are times when it all happens at the same time. These heightened times are known as flares, when the disease takes hold in a way that it cannot be controlled. The medicine usually changes with symptoms, thus the costs of doctor visits and medication is additionally horribly painful to the pocket. In retrospect, to understand the upheaval this disease persists upon in one’s life, you’d have to be diagnosed with it to truly comprehend what it’s like living with lupus.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

During my 23 years of living with this disease, I’ve learned that self-monitoring is the first method of self-care that a person newly diagnosed with a chronic condition needs to practice. You cannot support your own successes without tracking your good days and bad days. Maintaining records on medications, symptoms and even your surroundings and feelings help make for a better you.

How important has it been to you to find other people with your condition who understand what you’re going through?

It is has been vital that I connect with others dealing with the same condition that I have. Because this disease is so complex and multi-faceted, it is helpful to communicate with other people with my condition. Those, like me, know firsthand how difficult managing this disease can be.

Recount a time when you’ve had to advocate for yourself.

For anyone living with a disease that changes almost as much as the weather, advocating for your health is not an easy task. Lupus flares do not always call before they stop by; so you end up visiting the emergency room more than you’d like to.

With this being said, there have often been times that I’ve had to insist on having an emergency room attending physician ‘check’ for certain vitals that they would normally have not taken or reviewed. When you are already weak, distorted, and out of sorts, as a patient, you are not taken seriously or seen as being a ‘complainer.’ This can be hurtful and annoying. This is why I keep a journal of my symptoms and other important medical information such as my current physician’s contact information and latest test results. Being able to quickly access this information and add to it, if necessary, allows me to advocate for my health and insure that I am taken care of in the best way possible, with the most accurate amount of information.

What made you want to join the PatientsLikeMe Team of Advisors?

It wasn’t that I just wanted to join the PatientsLikeMe Team of Advisors, I just HAD to join! There was no way that I would not have wanted to be a part of a team that helps others advocate for themselves in the most sensible and realistic way possible! PatientsLikeMe believes in the patient point of view to healthcare. How about that for an idea? We need our healthcare providers to know that we appreciate them, but we also need them to know the best way to care for us. That means being open, truthful and as informative as possible when it comes to relaying health information. PatientsLikeMe does just that! They give patients, like me, a voice. A voice that’s loud, clear, and monitored all at once. And, as a patient, this not only helps me, but allows my one voice to be an additional advocate for lupus healthcare awareness.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

Everyone needs a safe place of understanding, a nest of relief from feeling anxiety for being misunderstood. Being able to connect with others diagnosed with lupus is comforting. The PatientsLikeMe site provides this place to connect and more. Not only is the helpful health information always relevant and up-to-date, but my very own personal information assists me with my own care. I can look back at my information, target where a flare may have been triggered and get a more than typical perspective on my overall health.

What are you putting off out of fear from your condition?

You have to consider using and appreciating what you already have before you can begin to be happy. You have to do your best to not let the pain, depression, frustration and fear take over your mindset. Meditating and listening to yourself is one of the best ways to clear your mind and re-center. It doesn’t happen overnight, but it can happen. Putting off your aspirations, dreams, and wants due to the fear of what an illness can do means you are standing still. In order to get where you want to go, you have to move. And that means moving past the fear of what could happen into the path of what will happen.

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