- My diagnosis has changed the way I live in some ways while in other ways I think it has strengthened me. I feel that my body is more fragile and I really have to listen to what it tells me. There are times I just can’t do things that I would like to be able to do. I need to be aware of stresses that may set off flares. It has strengthened my ability to prioritize the important aspects of my life and to value the life that I am able to live.
- There are many challenges that I have faced because of this disease. The biggest challenge is dealing with the many impacts of the illness on my body. Navigating insurance, doctors’ appointments, tests, and medicines is another challenge. This disease often does not have visible signs because it affects the internal organs so sometimes people find it hard to believe that you have a chronic illness. On the other side, well-meaning people, who know of the diagnosis, treat you as if you are always struggling.
- My advice would be that you absolutely need to have a good support team whether it is family, friends, or a support group (it is probably best when it includes all three). Be sure to find a doctor or doctors who will really take the time to truly listen to your needs. Finally, let others help when you need help (hard for most of us to do).
- I feel that my faith has really helped me deal with my Lupus. It has allowed me to put things in perspective and cherish all the positives in my life: my marriage, my family, and my friendships. The loved ones in my family that I have lost, including my sister, Barb (also a Lupus Warrior), inspire me to continue to live the best life I can while I can.
Our second Lupus Warrior Spotlight goes to Yasmine Shakur!💜 Read more about Yasmine's Lupus journey below.
- Since being diagnosed with lupus my life completely changed. Before lupus, I was a normal teenager, it definitely made me grow up in a very short amount of time because I had to become responsible for my health. However, it has also guided me towards trying to build a better future for others in the same situation.
- The biggest challenges for me with lupus has been not overdoing it and learning where my limits are. It’s very easy to over do it and cause a flare, I think setting those limits for your self and having others respect those limits can be the hardest part. It can be difficult making and keeping friend due to this reason, but when you find the right people it really makes you value them.
- I would give the advice to first, find someone to talk about it with. Mentally it has helped me so much, especially navigating a new diagnosis and a new life. And second, you know your body the best. If you believe that your not getting the best care for yourself, speak up. At the beginning of my diagnosis I was afraid to speak up about what I was feeling, this led to more hospitalizations and flares.
- Honestly, I am most inspired by the other women and men with lupus and chronic illness that battle these cruel diseases daily. It’s truly inspired me to keep going and keep trying to get the life that I’ve always wanted with my illnesses.
In honor of Lupus Awareness Month and Mother’s Day right around the corner, I wanted to take a special moment to highlight the woman whose legacy I strive to carry on daily. My mom was diagnosed with Lupus when she was 21. Lupus took a toll on my mom’s body in several ways, some being her joints locking up, her hands constantly swelling, and her eyes hurting and often so dry. My mom was a warrior indeed and did not let Lupus stop her from going out, drinking a glass of wine, and pursuing her career. I admired the way she battled immensely, and I admire the many warriors who do daily.
My mom is one of the main reasons I am so eager to fight to find a cure for Lupus every day. To each person who- is a lupus warrior fighting, supports other warriors, donates, and more, thank you to each of you. For those who will be missing a loved one this Mother’s Day, I am sending my love and light your way. For those Mother’s who are warriors, Happy Mother’s Day to you; you’re so strong! To my beautiful guardian angel, happy early Mother’s Day. May you continue to guide me through life through butterflies and your love in spirit.
This weeks first #LupusWarrior Spotlight goes to Valerie Navarrete! 💜 Read more about her Lupus journey below.
- Where do I start!? Is it difficult? 1000% but I don’t focus on the negative when it comes to talking about it. Lupus has made me appreciate life more, from all the near death experiences it has really made me embrace values and what life really means! I appreciate things overall wayyy more then I would of without having these traumatic events that lupus has caused in my life.
- The biggest challenges I have faced with lupus is probably being misunderstood by doctors, friends, & family & lupus flaring up and popping in at the most inconvenient times.
- The advice I would give others battling lupus is NEVER GIVE UP! I know it’s hard & I know this can be a sensitive subject but “the doctors aren’t always right” trust your gut instinct you know your body best!
- I inspire myself and my kids push me for the inspiration. I have little ones watching me constantly and I need them to see that example of how to be a strong individual. Having to overcome sooo much when lupus gets in the way is such an inspiration to me. It’s like seeing a timeline of your life and you get to look back on times when you would think you’d never get through it or past it and you look back and get to say I DID IT!
- Since being diagnosed, I have had to create a new norm for myself. This included taking medication every day and having consistent doctor appointments. I have had to adjust what I eat, and the amount of time I spend in the sun. Most importantly, I’ve had to learn my triggers for lupus which can be stress, lack of sleep, and Exercise. I’ve been very fortunate to have been to be diagnosed young and learn to manage it. I can happily say my Lupus does not typically affect my day to day life!
- The biggest challenges have been controlling my joint and muscle pain when it happens. Often times, my lupus flares up and affects multiple areas of my body at once. This can make normal activities very hard. Another challenge is the fatigue. I am constantly tried. But drink lots of coffee to cope! Haha.
- My advice would be to identify your triggers. Learning to manage my stress had significant impacted my ability to minimize my pain. Also, exercise is so beneficial To battling your lupus.
- The women in my life inspire me to be strong and to push through anything life throws my way.
This weeks third #LupusWarrior Spotlight goes to Kathy Rivera! 💜 Read more about her Lupus journey below.
- I was diagnosed with Lupus in June of 2012 i was in my early 20s prior to I had only heard of the disease in two different occasions so I really didn't know much about it. I just knew that it was a pretty terrible disease so when I was diagnosed I was terrified. I remember feeling like a part of me had literally died when I was told . I finally understood why I was always in so much pain, so tired all the time and couldn't keep anything down, so even though it was a relief to know what was wrong it was also devastating to find out that I was going to be dependant on medicine and doctors for the rest of my life... all of a sudden I had a whole new set of rules to live by at 20, I have to hide from the sun which was so hard for me because I loved being out enjoying pools beaches etc..... Definitely a huge change for someone in there 20s. I had to take naps, and learn to say no to my friends because I didn't have the energy to keep up with them on a daily basis. I lost tons of weight in the beggining stages lost so much hair, had terrible rashes and could barely do anything for myself... it was definitely one of the most difficult years of my life....
- Hmmmm this is tough but I would have to say the biggest challenge for me was 1st overcoming the mental aspect of it, and second going through the process of finding the proper treatment to control the disease.... The year I was diagnosed I was faced with so many changes and I felt like I was losing control of my life. I didn't look like myself because my weight was fluctuating rapidly and the medicine i was on was changing even my face, I was so swollen, with barely no hair walking with a cane, mentally and emotionally it broke me down I remember being desperate and knowing that if I didn't reach out to someone for help I wasn't going to survive this disease mentally. A year in I chose to finally speak to a psychologist and that helped me big time.
- Don't suffer alone, fortunately there is more research on it now and many people know more about it, ask for help, talk to your loved ones about how you feel, work on keeping your mind and body as healthy as possible, work out when you can, eat good food healthy food, do more of what makes you happy and keeps you calm so that you have less flairs and always keep your faith. Stay positive, me being afraid was normal but allowing that fear to control my life only made my flairs worse, stress made my body hurt more, my hair would fall off more. Stress never helps anyone so I would say surround yourself with those that love you and try to live your life to the fullest on the days that your body allows you to do so....
- After 9 long years of living with Lupus i have been blessed with my very own family, and I'm also a Boss Mom!!!!! I am a Wife/Mother of two beautiful Children Boy 3yrs and Girl 2yrs they inspire me to fight , and to keep going everyday but most importantly through this process I've allowed myself to be my own biggest inspiration. I never in a million years would've thought that I had the strength and resilience that I found within myself. Through the struggles the pain, the doubts fears and and everything that comes along with the disease I've trusted God, kept my faith and I've stayed true to who I am and want to become as a person in this life.. My goal is to inspire people like me to never give up, and never let an outside circumstance or something they can't control to define who they are...This disease sucks, but it doesn't have to control your whole life , take control of your well being educate yourself on what your body is going through and take the proper steps to help your body recover , we aren't called warriors for no reason, we are powerful. We are beautiful and we deserve to live a normal life.... Lupus sucks but it doesn't mean that you have to.
This weeks first #LupusWarrior Spotlight goes to Megan Benzik!💜 Read more about her Lupus journey below.
- I was diagnosed when I was 12. I didn’t live a “normal” childhood. I was often taken out of class early to attend doctors appointments, I had to turn down hanging with friends so I could rest, I had to remember to take my meds, and I had to face my fear of needles. I was forced to grow up faster than most kids my age because I had to take responsibility for my health.
- I got sick with mono in high school, which led to a severe lupus flare that created a pseudo-tumor in my brain. I was bedridden for over a month, and needed to have multiple spinal taps. It was after this that I officially committed to overcoming lupus. Fatigue has always been my greatest challenge, but it currently rarely effects me anymore.
- Research and understand what causes lupus and how it can effect you. Learn how to nourish your body properly, surround yourself with positive people, keep stress to a minimum, lift weights, strive to achieve health (as opposed to fighting lupus).
- Everyone who has decided that they will not allow a diagnosis to control their life. The people who choose to work for their health as I have.
This weeks second #LupusWarrior Spotlight goes to Melissa! 💜
Read more about her Lupus journey below.
- When my first symptoms were beginning to show I was newly engaged, in graduate school and working a dream career job.
- I was active and loved hiking, camping, kayaking, and being with friends. I miss that me. However, it came to a point where it was too much to function at home and work, so my new full time job is caring for myself. These last 4 years have not been easy as I adjust to the new me, yet I try hard to stay positive, no matter what that day presents me with I always remind myself what I am grateful for.
- People always assume I’m lazy when they have no idea how much effort it takes to just be up and about. Listening to my body was a challenge at first and adjusting my life to make sure I was not over doing it. Chronic illnesses have a special way of reminding us that we need to slow down. With an illness like Lupus, your health and body are a little more fragile than most, and with this I have had to learn how to be more cautious and deliberate in how I treat my body. Slowing down does not mean you have given up or you are letting your disease win, it simply means you are respecting where your body is right now and reaping the benefits. By slowing down, we can enjoy the moment we are in its purest form.
- Never let anyone minimize what you feel. I have been learning how to advocate for myself. I have never been strong at it, but after too many times where I have felt like nothing but a number in the medical system, I have learned to never allow anyone to minimize my symptoms. I know my body best, and although I may not look sick from the outside, what I know hurts and does not feel right is 100%.
This weeks third #LupusWarrior Spotlight goes to Jordyn! 💜
Read more about her Lupus journey below.
- Lupus impacted every part of my life. I had to start listening to my body, following the demands of my doctors, make sure I didn’t spend too much time in the sun, and eating healthy. It was difficult for awhile since I was diagnosed at 18 and not ready to make all those changes. Although it’s been a long journey I have been able to cope in positive ways.
- The unpredictability has caused so much anxiety and stress but at the end of the day whatever happens is meant to happen. I’ve experienced a blood clot, severe edema, hair loss, and have been battling kidney issues for a decade now. But the biggest challenge of all is knowing there is no cure for this awful disease.
- Listen to your body! It might seem obvious but a lot of us push ourselves beyond our limits and we pay for it with a flare up. Make sure you have ways to relax and de-stress. Get a massage, retail therapy, actual therapy, or a simple walk with a good friend. So take that nap, cancel those plans, and try and relax your mind and body. These simple things can make a huge impact on your journey.
- THIS COMMUNITY INSPIRES ME EVERYDAY! I have family and friends who are wonderful supporters but being able to connect with people who have gone through what I have is inspiring. Lupus warriors are no joke! We advocate for this disease everyday while battling an invisible disease and balancing jobs, family, appointments, school, and a social life!
- After being diagnosed with Lupus and Postural Orthostatic Tachycardia syndrome, Valerie’s health was the worst it had ever been. She was on numerous medications, depressed and she was losing herself in every way. One day, she decided to go vegan after watching a popular documentary and it has made a huge impact on her health. She wants to share her journey and help others who have health issues as well.
- My life has changed in so many ways since being diagnosed with lupus. It took years to officially be diagnosed, I was sick and in pain for a long time prior to my diagnosis. I’ve had to learn to understand my body and not to push myself. I am still learning that it is okay to not be okay and that if I’m sick, it doesn’t mean I’m being lazy.
- Living with lupus is a challenge in itself on a daily basis for so many reasons. One of the biggest challenges I’ve faced in the past few years is not being able to continue working full-time in a career that I absolutely loved. My memory loss has also been very challenging and become a huge frustration that I’ve had to learn to live with.
- The advice that I would give others who are battling lupus is don’t let this diagnosis define you. Journal how you feel daily, how medications, certain foods, activities, etc. make your body and mind feel. Get to know your body and take the time to understand what you need.
- My husband. He is my rock. I was diagnosed with lupus and postural orthostatic tachycardia syndrome before we were married and he’s been here for me through thick and thin. When I’m sick, he’s there to pick me up and he has never left my side. He cares for his disabled clients every day at work and comes home to care for me when I’m sick. He never gives up, always has a smile on his face and is one of the hardest working men I have ever known. He is absolutely amazing. He inspires me every single day to be strong and stay positive.