November 2017

A Message of Thanks and Motivation

Vern Seneriz, founder Lymphie Strong

Veronica “Vern” Seneriz has lymphedema and founded the Lymphie Strong social channels and blog as a way to motivate herself and others to get and stay moving. Learn more about her and Lymphie Strong at staylymphiestrong.com.

Thanksgiving has always been one of my favorite holidays of the year. For me personally, it is a time for reflection and renewal, and I am incredibly thankful for all the positive milestones we have achieved this year in the #MOVETHATLYMPH for Lymphedema & Lymphatic Health cause.

I have had lymphedema for more than 23 years. My father, with 40 years of LE, learned to adapt from his father and handed down tips for management that helped me reverse my Stage 1 diagnosis, which took an entire year. One of the major components of my reduction process was finding comfortable garments that I liked to wear, were comfortable, and felt fashionable to me. Juzo provided those, and I absolutely love the tie-dye. Another major component was the ability to exercise again. A doctor told me in 2010 that I could forget about exercise with the exception of briskly walking for 15 minutes. This was before advances in research had been published, and as we now know, it is simply untrue. I started out slow and eased into a plan with an amazing coach. Exercise and compression were my salvation.

During this time, I founded the Lymphie Strong social media groups and blog to reach people who might not otherwise have a support system, as it can be very isolating to have this disease. A courageous group of people got together with me, and I created The Lymphedema Running & Fitness Club. When I did my first 5K ever, my father asked me what cause I was running for, and I told him nothing. He said that it was crazy to run for nothing, and a few days later, I said I would run for lymphedema. “Ok, I’ve got this cane,” he said. “Promise me you’ll run for me too.” I answered that, “For as long as my legs allow me, I will run for you.”

This year, we kicked off the #MOVETHATLYMPH Challenge Series, a platform to get moving, stay moving and commit to your lymphatic health by doing something active, every day, for at least 10 minutes, 365 days straight. To keep the momentum going strong, we implemented a Summer and Fall Challenge, and more than140 people from around the world joined. We are incredibly thankful that Juzo became our first corporate sponsor for the Fall Challenge and donated the top two grand prizes in the form of compression.

This Thanksgiving, as I reflect on what I’m thankful for, it’s the feedback I get from people all over the world. It pushes me to work harder for the cause. Someone, somewhere out there, always needs a boost. Here are just a few comments others have shared with me:

“I participated in the summer and fall #movethatlymph challenge, and its impact on me has been fantastic. I love this lymphedema community, and I feel very fortunate to have found it right after being diagnosed. Through these challenges, I have been encouraged, motivated, and inspired to keep pressing towards this new healthier, active lifestyle. Days when I feel I lack the motivation I need, I can come here and see others (some who have major mobility issues), pressing on towards being more active, and it pushes me forward.”

“I read all of the posts on your site daily! You encourage me and make me realize that my legs don’t control me. I control me!”

“So often we think ‘I can’t,’ and it’s Lymphoedema that is holding us back, but honestly...we can! I train really hard and often and have an active community to encourage me. This challenge helps me to encourage others to say, ‘I can.’ It’s nice to know we are in it together!”

If you are reading this and have lymphedema, always remember that you are braver and stronger than you think. You are not alone with this disease, so try to surround yourself with positive like-minded individuals who share the same mission as you. You will be so thankful you did. Happy Thanksgiving.

JC commented on Nov 27, 2017

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Vern, You are such an inspiration. Thank you for all you do!!

Marti Dotson commented on Nov 21, 2017

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I would love to thank Vern for being such an inspiratiion to me. I joined in the fall challenge to exercise 60 days straight. I had never done that. I was hospitalized with cellulitis this past July and am still recovering from a broken leg Vern would even private message to encourage me sometimes. I am going to make her proud and do a 5k. My broken leg is just not quite up to the training yet so she encourages me to do what I can on land and lots in water. I am so thankful for her and others dedicated to helping those struggling like I do.

Julia commented on Nov 20, 2017

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Lymphoedema *can* be such an isolating condition. We're often met with barriers - you can't exercise, you can't travel, you can't do adventure sports, you shouldn't do that treatment etc. When I was first diagnosed, I felt like I had so many negatives. Over time, I've come to realise that with my condition, I can! I can (& have) done quite a bit of travel, I've participated in extreme activities (like white water rafting & sky diving), I've tried so many different types of treatment it's not even funny, and to the best of my ability, I've tried to keep my chin up and keep doing the best I can to live the best life I can. Having the support of this community has been pretty great. It now feels like I'm not the only one. We all face our individual battles, but we know that we have people in our corner, barracking for great results!

Flo Lombardo commented on Nov 20, 2017

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Without Vern’s group, I would be lost. I’ve had LE for years, but didn’t receive the diagnosis until February 2017. I was finally happy to know what was wrong with me, but really scared. Vern is an inspiration. Her group was the first I found after my diagnosis. The support I have received will never be forgotten.

Tammy commented on Nov 20, 2017

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I am so appreciative of Vern and everyone I have met thru her social media groups. I was diagnosed with secondary lymphedema many years ago, but just began treatment a year ago. Donning compression left me feeling isolated and very much alone. Coming across Vern's page, LymphieStrong, empowered me to take steps to gain my life back. Without this group, I would most likely still live a life of isolation. Lymphedema is not a death sentence and Vern's example has shown many of us we can live a full life with lymphedema.

Judy B commented on Nov 18, 2017

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It is SO amazing to be among like-minded people facing the often-similar challenges of being active while coping with lymphedema. The summer and fall #movethatlymph challenges have a been a great way to give and receive encouragement. You can't slow me down! Even though I've had lymphedema for 17 years, I still love competing in outrigger canoe races, swimming, pilates, and working out at the gym.

Terry Moore commented on Nov 18, 2017

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I have been a member of Vern's Facebook groups, followed her on Twitter and her Blog for a little over a year, and can honestly say she is one of the most compassionate, caring, giving and selfless people I have known. She puts so much thought and immeasurable time into all she does. Although I have had symptoms of Lymphedema on both legs for over 30 years, I was not diagnosed until 2 years ago, due to the majority of the medical field and doctors not having much knowledge or awareness of Lymphedema. It is because of people like Vern & her tireless efforts to educate people and bring Lymphedema patients together, that helps us know we are not alone in our fight with Lymphedema and all the ways it impacts our lives. The support groups that Vern has formed and continues to administrate, have brought people together from around the world. We have learned from each other in so many ways, both for suggestions, tips on different ways to manage our disorder, offer support when we are feeling down or challenged, encouragement when we need an extra push to keep going, and to cheer each other on when we have successes, no matter how big or small. I have learned so much about Lymphedema and been inspired by all the people I've met through these groups. I now know that I am not alone, and that together we can help spread awareness! I have learned from Vern & others in these groups a variety of ways to manage my Lymphedema, or know where to go if I have questions or need feedback. All of this has been made possible by Vern and her work to spread awareness and compassion for what we previously thought we were alone in dealing with. Together we are stronger and won't let Lymphedema take over our lives!!

Terri K commented on Nov 18, 2017

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I, too, have lymphedema however it is secondary after cancer treatment. The challenges have helped me stay motivated to #movethatlymph. I've have learned so much from others. The positive comments from the other participants on my posts make me smile. I now have virtual friends who I can ask questions to. Vern is one of those friends and I am grateful for her work in educating and supporting us. No one chose this but it's wonderful to have others who understand. I'll be giving thanks for Vern and the groups she has started along with her activities to educate this Thanksgiving and every day!

Catherine Tucher, Surrey England commented on Nov 18, 2017

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I am thankful to Vern!! She has single handedly brought together Lymphies from around the world via her blog and FB Lymphie Strong Inspiration Group. LE is an incredibly isolating disease emotionally, socially and physically, especially due to the disfiguring and debilitating nature of it, especially for those of us with most of our body affected by it. Without Vern's group I would not have connected with two others with Primary LE that live only 30 minutes from me and attend the same Lymphoedema Clinic but never would have otherwise met. LS Inspiration Group is what keeps me and countless other Lymphies from giving up on our worst suffering days - the group does what says on the tin, it's inspires, motivates, supports, educates, promotes comradery, and ensures we do not feel alone when we are lonely because non- Lymphies don't have a clue what it's like to be a Lymphie; to experience the massive life and daily lifestyle changes that are so often imposed on us. Not to mention the additional health implications we have to be constantly on guard to. It's a dreadful disease but Vern's positity, inspiration and advocacy for a cure to be discovered, show me and thousands of other worldwide Lymphies, therapists, medics and legislators, that we can push ourselves through every day, often against the odds, until a cure is discovered. Vern is my hero!! ????

Julia Bonogofsky commented on Nov 18, 2017

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Vern you are such an inspiration! Thank you for all you do for us lymphies!

Hannah Gilsenan commented on Nov 18, 2017

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I live in the U.K. and when I was diagnosed with Primary LE last year I felt totally alone and scared. I started researching and found a number of support pages for Lymphoedema, but the ones that have made such a difference are Vern’s. Through her brilliant pages I’ve learnt so much about self management of the disease, challenging myself to improve my health and fitness and how to get better care and compression. Thank you Vern!!

Tanvi Pande commented on Nov 18, 2017

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This group for me was a ray of hope in the dark world of lymphedema where I found myself alone. Interacting with a group of people with similar issues and watching them bettering themselves with a commitment is supportive and encouraging. Vern is a huge pillar of strength and with the kind of hard work she puts into keeping all of us together she deserves a huge applause. Im thankful to the universe for helping me find this group and the people.

Elna Brunckhorst commented on Nov 18, 2017

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I found Vern's group on Facebook not long after my post-surgical diagnosis of secondary lymphedema. She and her followers, our 'LE family', support each other and share critical health info. It's a lifesaving group, and Vern is at the heart of it. Thank you from my full heart, Vern!

Pamela Goss commented on Nov 17, 2017

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Inspirational! Going to copy some of this. Thanks

Pamela Goss commented on Nov 17, 2017

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How inspiring, Vern! I'm going to print some of this and stick it on my wall. My v daily exercise is to roll my ankles 10x each way, pump my feet x10 wriggle my toes and tighten them x10. Obviously I'm not very ?? One of those 140? People is an ex student of mine and it was through her mother in law that I discovered this group.

Amy D commented on Nov 17, 2017

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I am so deeply grateful for Vern and Lymphie Strong! The Lymphie Strong group offered a turning point and an incredible point of access to the LE world for me. Living in a small rural town in Colorado, I don't have any in person support options, and I venture to say very few people if any who have primary lymphedema and who would travel to a meeting if I spearheaded it. I have felt so ALONE with my LE, and this group is truly the only place I have found solace and community. You have curated the most amazing culture in this group, focusing on positivity, empathy, community, and acceptance. The group offers a space for people who don't have other resources or the means to make it to in person meetings. The Fall Challenge has been a particular motivator for me; I don't think I would be quite so invested in shifting my lifestyle to include more exercise without the support and camaraderie of the Lymphedema Running & Fitness Club group. It's amazing to have contact with so many other people who thrive and struggle with LE, and who are all there to be seen and heard and understood and provide that for others as well.

Joan Bettis commented on Nov 17, 2017

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I am so grateful that I found this group shortly after being diagnosed with Lymphedema. Because the medical community lacks experience with this disease I felt that I had nowhere/no one to turn to. Being accepted by all in this group has informed, encouraged, and given me courage to work toward the healthiest I can be.

Buffy Friedrich commented on Nov 17, 2017

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This group has given me hope when I didn't think there was any left. It gives me constant knowledge, motivation and a sense of belonging. Experiencing a life altering condition is hard on you mentally, physically and emotionally. This group is supportive and inspiring. Vern is such an inspiration to so many, and we can't thank her enough for all her time and effort she puts forth for the Lymphedema community. #lymphiestrong

ERV commented on Nov 17, 2017

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Vern’s groups have been such a valuable resource for me! The information shared has given me the tools to take charge of my health!

Tina C commented on Nov 17, 2017

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As always, you are such an inspirational friend. You have brought so many of us together in support & friendship!

Leah Hupper commented on Nov 17, 2017

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I am so grateful for the Lymphie Strong group. I was diagnosed with secondary lymphedema two years ago after a radical lymph node dissection. I don’t know anyone else with lymphedema and the group has helped me get over some very tough hurdles. I don’t know what I would have done without the support and encouragement

Nancy Grover Burns commented on Nov 17, 2017

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This group, and Vern, mean the world to me. Since joining the “movethatlymph” challenge, I have learned so much from the group. The inspiration and knowledge that is shared by and for all members is so important for of of us to face lymphedema head on. Healthcare providers struggle for answers, so when one in the group learns something new, or has found something helpful, this platform is so important for sharing. Vern is tireless in speaking and promoting lymphedema...what works, what doesn’t. I feel blessed to have found this group.

LuLu commented on Nov 17, 2017

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I am so very grateful for the encouragement I receive in the Move That Lymph Challenges. Lymphies are an incredibly strong group of people. Lymphie Strong is a fearless leader and will stop at nothing to spread awareness about our disease. Keep moving!

Kati Cook commented on Nov 17, 2017

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I am so appreciative to Vern and her support groups, the lymph edema running and fitness club and her other group Lymphie Strong. They have educated me and motivated me to maintain good health, stay on top of my treatment and wear my comoression. I no longer feel alone with this unique condition and know that there is a whole community out there that is willing to help support each other as we journey through life.

Judy commented on Nov 17, 2017

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I found this group on Facebook and suddenly did not feel alone anymore. I was good about wearing compression, but not while I ran. The day I joined this group, I was reading posts while getting ready to go running. I stopped and went back to put on my compression. I knew I should wear compression while running, but didn’t always wear compression. This group nudged me. I am a runner who loves to stay active. I joined both the Summer and Fall challenges. These challenges encouraged me to record my workouts. I found this helpful. I was accountable to the group, I was encouraged by others, I encouraged others. I jumped on Facebook many times a day just to see what others were doing to workout. I started running on trails. I learned how to throw a medicine ball. I found a pool to move in. I stepped out of my comfort zone and became happier because I am here.

Deborah Walker commented on Nov 17, 2017

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I have been a member of Lymphie Strong since the beginning. And recently became a member of The Lymphedema Running and Fitness Club. I have learned so much from Vern and the other members. such as you have to be your own advocate. I believe as a group we are helping to make positive changes in the Lymphedema community. We are growing everyday. Great things are happening because Vern started this group. I'm so proud to be a part of this Lymphie family! So proud to call Vern my friend! You have made a big impact in my life and I will forever be grateful that our paths crossed!!

Julie Mavis commented on Nov 17, 2017

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I was recently diagnosed following surgery for cancer and pelvic radiation. I was really scared of getting Lymphedema, but I knew it was a possibility. Vern’s social media efforts have been invaluable to me in education and the community of companions who understand and can offer wisdom through experience. What a Godsend!!! I can’t thank Vern enough for being willing to diligently provide us with these resources.

Christine commented on Nov 17, 2017

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Giving real-time support to fellow Lymphie Strong members has made me all the more committed to taking care of myself and keeping a positive outlook. It's hard to imagine the years I spent knowing not a single other soul with LE!

Ellen Wright commented on Nov 17, 2017

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The Lymphie Strong Facebook groups led by Vern have been such a help to me caring for my lymphedema. The members share their knowledge and support each other. I really enjoy the fitness challenges. They are very motivating and it is so interesting to read about how others stay active

Diane Lieder commented on Nov 17, 2017

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This group is awesome! When I was diagnosed after almost 40 years, told I have Lymphedema but they didn’t need to see me anymore, I was alone, angry and frightened. I found this group and it has saved my sanity and made me do my own research. I have learned so much from Vern and this group.

Jessica commented on Nov 17, 2017

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As a person with Lymphedema, this Lymphie Strong community along with the #movethatlymph challenge have been incredibly empowering, motivating, and inspiring. I'm so thankful that as soon as I was diagnosed with lymphedema, I had a place to go where I didn't feel alone. I learned so much from everyone else. Seeing others push themselves physically, helped me realise there was so much more that I could do with my own health. I'll be forever grateful for all my friends in these communities