The summer is almost over, ahhh! I’m not mad about it—I much prefer the cooler months, which I find to be a lot easier on my lymphie leg both physically and fashion-wise (pants and leggings 4ever). Plus, the end of summer means it’s getting closer to the September Walk to Fight Lymphedema and Lymphatic Diseases in NYC!! Super exciting. I’m hoping to be there, so if you’re going, be sure to say hello!
Ooh, I can’t wait for it to cool down and be autumn already. When I think about it, though, the blog has had quite the good summer! From meeting other lymphies at a fundraising walk to hearing inspiring stories to simply beating the summer heat, it seems as though it’s been a lovely balance of community, fun, and good health over here, and I can’t complain about that!
In the spirit of reflection, I thought it would be fun to look back on the most popular content from the summer on the Lymphie Life. These were rated based on viewer counts and site analytics, but if there’s a particular one you’ve enjoyed that didn’t make the list, please share it in the comments section below. Also, please let me know what topics you’d like to see discussed in future posts!
Inquiring minds want to know… while you were keeping cool this summer, what were you all reading and clicking and liking and sharing?
Top 5 Posts this Summer
- Lymphie man uses humor and storytelling to share about life with lymphedema: Jake Miles shared an honest (and humorous!) video about his experiences living with lymphedema. Definitely worth a watch!
- Lymphorrhea: the leakage of lymph: a short-but-sweet guide to that pesky fluid that sometimes leaks out of your lymphie limb, and how to deal with it safely.
- New Methods for Lymph Node Transplants Offer Possible Relief from Cancer-Related Lymphedema: a method called reverse lymphatic mapping has been developed by researchers at Memorial Sloan Kettering Cancer Center that could make lymph node transplants safer and reduce the risk of lymphedema developing after cancer treatments.
- Nutrition & Lymphedema: a breakdown of lymphedema-friendly nutrition along with some ideas on how to introduce these tips into your own dietary routine.
- “I always end up still feeling good about my body”: How one woman with Parkes Weber Syndrome stays positive: by far the most viewed post this summer, this post about Isa-Bella went crazy viral along with her beautiful message of positivity.
Top 3 Facebook Links
- Starting a New Chapter: Grace, a fellow lymphie blogger and personal friend of mine, wrote an inspiring post about getting the courage to wear her compression stockings. This must-read was just as empowering for us to read as it probably was for Grace to write!
- Kathy Bates: My Battle with Lymphedema: the American Committee and the Weizmann Institute posted this essay by Kathy Bates in which she discusses her experience with lymphedema as well as the importance of raising awareness. Every time I see or hear something from Ms. Bates about lymphedema, I say a little prayer of thanks that we have such an awesome spokesperson! #ILoveQueenKathy
- Isa-Bella Leclair on the Daily Mail: this was the first post I saw about Isa-Bella before her going viral and I couldn’t have been prouder! Like Ms. Bates, Isa-Bella has been using her visibility as a means to share about important issues such as body positivity, living with chronic medical conditions, and, of course, lymphedema :)
- Bonus: Kimberly DeRemer Szekeres shared this photo of her son, Luke, on the Lymphie Life Facebook page. Luke, an eleven-year-old with lymphedema since birth, had just suffered a bad bout of cellulitis this year that left him in crutches for six months. That didn’t stop him from placing third out of sixty other competitors in a golf tournament, though! Way to go, Luke!!!
Top 5 Instagram Photos
These were the most liked photos on The Lymphie Life’s Instagram over the summer. If you’re on Instagram and not following @lymphielife yet, you’re missing out! (Missing out on mostly selfies and pictures of my shoes, but STILL!)
Hi Alexa! Wanted to tell you I still follow The Lymphie Life and you are amazing. A year ago I underwent a second surgery for breast cancer. This time I had radiation treatments (first time it was chemo only). Since radiation the lymphedema has gotten worse. So I met with the expert here in Napa and just got a new sleeve AND a vest for the shoulder swelling. So now I am getting used to being “compressed” from the waist up! Kinda weird, but I know this is for the best. When I was not in a flare-up, it was easy to forget my regimen. Thank you for constantly shining the light of hope to those of us living with lymphedma. I think of you often and am so grateful I had a chance to know you. Blessings and keep going!
Linda! It’s so good to hear from you!!
I’m sorry about your second surgery, and that your lymphedema has worsened… I hope you’ve been doing some writing during those difficult times (and writing during the good times, too!). The vest sounds like something that would take a lot of getting used to, but like you said, it’s for the best, and the compression will hopefully bring you some relief. Who knows—maybe LympheDIVAs will start making some cool stuff for compression vests and you can match your sleeves! (I’m still waiting for them to make leg ones… I love their patterns.)
It seems like you’re keeping a positive attitude, which is great! I’m so very proud to hear that you’re taking care of yourself and your lymphedema. It makes me feel good that you live near a specialist, too, as they’re not only good at offering support but also holding us accountable about following our regimens. I’m seeing my LE doctor this week, actually, and I’m sure they will have something to say about my lax garment-wearing habits. (I’ve been more consistent lately, though, despite the muggy Baltimore heat.)
I’m missing you! I was just reflecting the other day on my 22nd birthday, how you played guitar and sang so beautifully for me and our friends… it was so perfect. Sending all the best + lots of love to you and yours!
xx Alexa
I love your blog! You have inspired and helped me so much. I wish your blog was around when I was teenager; that was a really hard time to have undiagnosed lymphedema. But even today I’m still very grateful for your dedication to lymphedema care and outreach. I’ve learned so much from you. Thank you and God Bless!
Hooray, I’m so glad you enjoy the blog! And I agree that being a teen with lymphedema is so difficult… it’s like, as if being a teen wasn’t hard enough and you weren’t ALREADY feeling totally self conscious, here’s an undiagnosed medical condition to make things more interesting! Ugh. I think it really makes us stronger to go through that, though, as cliche as it may sound. (And as much as our teen selves may disagree with that statement! Haha)
I’m so grateful for your kind words, Shameika, and hope you keep reading! Be well & stay elevated :)
xx Alexa
I have dealt with lymphedema most of my life. I have had numerous cases of cellulitis, multiple hospitalisations, i can’t keep a job because i can’t either keep my legs hanging or i cant stand for long periods of time. it has impacted my marriage in a very negative way. you know, just doing a little research landed me on your site. I find the term ‘Lymphie’ completely offensive. This affliction has destroyed my quality of life, to give it a cutsie name is disgusting to me. I ave to live with it, and to find someone even selling shirts as if this were some strange social disease is highly offensive. Lymphedema is not cute, it’s not ‘elevating’, it has taken everything from me.
Hi, David,
I’m sorry that you feel that way and are offended by my website. In the four years that I’ve had this blog, yours is the first comment I’ve received expressing these concerns. You’re of course entitled to your opinion, but I hope I can clear up some misconceptions you seem to have about my motivations and choices with this site.
I use the term “lymphie” not to be cutesy or denigrating but instead to foster a sense of community. Having lived with lymphedema and its physical, emotional, and mental side affects all my life as well, I find empowerment and support in the lymphedema community. Before I started the blog, I felt completely alone and hopeless. The lymphedema made me feel worthless and ugly, unloveable, and I struggled with debilitating depression, addiction issues, and eating disorders for many, many years over this. When I started the blog, these feelings did not go away, but they lessened immensely, because I realized I was NOT alone in dealing with this. There are millions of people living with lymphedema worldwide—millions! And there I was, feeling like the only one, so misunderstood in my pain for so long. It was life-changing for me to connect with these other people under the unifying “lymphie” label. It still is.
The term “lymphie” is an easy way to identify one another and this community, and is also much more convenient than writing out the lengthy, clinical sounding “lymphedema patient” every time ;) Many people have embraced it and use it themselves. I feel totally blessed to have built this community around The Lymphie Life, and to be able to reach and connect with thousands of people every day through the blog. I receive countless emails, messages, and comments from people saying that this website and the community around it has helped them feel more confident, less alone, and more hopeful in their daily lives with lymphedema. Many of my longtime readers have even gone on to start their own blogs about life with lymphedema, which I find to be so exciting and beautiful! It seems like the online community has boomed in recent years, and I am so grateful to be a part of that.
As for your offense to my use of the word “elevated,” I am not suggesting that having lymphedema is “elevating”—the tagline “Stay Elevated” is a double entendre of sorts, referring to the use of elevating the limb as a means to reduce swelling as well as staying positive in the face of living with a progressive medical condition. It is meant to empower, inspire, and encourage. I’m not sure what you mean by suggesting I am selling shirts promoting lymphedema as a “strange social disease”; I sell the shirts and merchandise as a way for people to embrace the reality of their lymphedema and hopefully invite meaningful conversation from strangers and spread some much-needed awareness about the condition.
Our lymphedema isn’t going anywhere. Just like any chronic medical condition—be it physical or mental—wishing for it to disappear or for things to be different is pretty pointless and ineffective. Instead of wishing for it to “go away,” I choose to be proactive and take care of myself by managing my lymphedema and accepting it for what it is. I tried dwelling in the negative for many years and it got me nowhere, so instead I celebrate and enjoy life with other lymphies that choose to do the same. The people who read my site, buy the merchandise, and identify with the “lymphie” label are practicing that same acceptance and embracing their realities for what they are.
A few years ago, I wrote a post about Wishful Thinking versus Acceptance and said: “I’m a big believer in that everything happens for a reason, and that includes my lymphedema. If I didn’t have it, my life would be drastically different, be it for better or for worse. I wouldn’t be me – I wouldn’t have made this blog, I wouldn’t have developed the empathy and compassion that it has taught me, and I wouldn’t have met all the wonderful people who make up the Lymphie community. I would be missing the valuable perspective and experience that it has given me.” I still stand by this, as it is my truth.
Yes, there are bad days, days where the depression creeps back in or I get a rude comment from a stranger about my swelling, but I take each day as it comes. I’m working with what I’ve got and I think, overall, I’m doing a pretty good job of it. I take a lot of pride in my website, but I owe a lot to the community itself: I know that my fellow lymphies are there for me to pull strength from if I need to, just as I am there for them.
I hope that clears up any confusion in your interpretation of my site, The Lymphie Life brand, and my motivations in creating both. I hope you find some peace in your life and that you are well.
All the best,
Alexa
Hi Alexa,
I can’t believe that someone took time out of their day to complain about using the term, “lymphie.” Perhaps David missed the incredible wealth of information you have collected on this site, and at no charge to the viewer. Keep up the awesome work and call it whatever you want!