Hello, lymphies!
My name is Alexa, and I’ve had lymphedema since I was an infant. I wasn’t born with it – instead, I had needed corrective casts on my legs after I was born, and one of the doctors put them on a little too tightly, damaging the lymphatic system in my right leg. And just like that – lymphedema!
I created this blog to share my journey with lymphedema as well as help those who may be feeling alone in their condition. I also want to spread awareness of lymphedema to those who maybe aren’t so aware.
Although I’m pretty knowledgeable about the feelings that come along with having this disease, I’m by no means an expert on lymphedema. I’m not a doctor! I’m just a college student and avid blogger. If you would like to learn more about me beyond the lymphedema, click here!
Hi!
I’m 16 and I’ve also had lymphedema since I was an infant. I was born with it in my left leg. I’m really happy to find you. I understand everything you said about how little things like finding shows turn into a big issue. I always hate when dances come around and I never go because I feel too exposed in a dress with my leg showing. I can’t talk to anyone about it. I also hate how I’m always having to explain it to people, or if I ever find a guy I really like before we go anywhere with our relationship I have to tell him about this condition that no one has even ever heard of. It’s lonely. But I’m working through it. Thats way cool that you made a blog about it. Well talk to you later :)
Hey, Allyson!
I’m so glad you found the blog, and I hope you comment on it often :) I hate how lonesome and isolated this condition makes us feel, which is why I made the blog – so those of us with it can feel less lonely, and realize that there are so many of us out there and we just don’t know it!
I’m sorry you have this condition, but hopefully we can all help each other feel a little less alone and a lot more positive about ourselves, now that we’ve found each other!
Be well <3
Hello to all who have come across this blog and suffer from lymphedema. Alexa I must say I am grateful to you for starting this and I am especially grateful to have found it. I got lymphedema when I was a sophomore in high school but was never officially diagnosed with it until I was a freshman in college. Part of what makes this so frustrating for me is that I don’t know what caused mine. I woke up one morning and BAM permanent swelling for the rest of my life. I have not had injuries or radiation from any kind of cancer so the questions still linger for me as to why and how. I can relate to the feelings of loneliness and the frustration of trying to explain to people who have never heard. I am not comfortable wearing shorts or dresses in public and it breaks my heart that I am limited because of this insecurity. I hope that one day awareness is made and we can continue this fight. and to the ones who have already expressed concerns here on this blog remember we are no longer alone! :) I hope others venture their way here and we can continue to encourage one another! Thanks for it all!
Amy, what kind words! Thank you so much, and I’m glad you found the site :)
I’m sorry that you have to deal with lymphedema – it’s something that no one should have to suffer with. The hyper-awareness it brings to ourselves and our body image is sometimes unbearable and oftentimes exhausting, especially when you feel like you’re going through it alone. However, I DO believe it makes us that much stronger. We live in a world where there is hardly any awareness of our disease – even in some medical communities! – and we have to keep fighting for ourselves and our health because there aren’t many people out there who are fighting for us.
Be well, and come back often! <3
Hi Alexa. Nice to find your website and blog. I’m a new lymphie at 67. The lymph nodes in my right groin were removed because they were swollen and then were found to be cancerous. (I learned a new phrase: ‘excise biopsy,’ where the organ is removed first, and then the reason is determined afterwards.) So now I have lymphedema in my right leg. I was getting pretty bummed because simple management seemed to be a loosing game as the lymphedema is spreading. So I finally decided to take some action: first research, especially about nutrition. Now I am going to look into acupuncture and/or Ayurvedic medicine. Acupuncture and Chinese herbs did what Western medicine could not several years ago when I had chronic fatigue. BTW, Ayurveda is the (eastern) Indian ancient form of medicine and diet is a major part of it. I will let you know if there are any significant developments.
Hello Alexa, my name is melanie, I am a 33 canadian women with primary limphedema in both of my legs. It is so refreshing to find someone like you who talks about lymphedema. We have all a story to tell and I feel that with you, here on your blog, we are not alone :) thank you for sharing all your moments with us!!!
Melanie, you’re so sweet! I’m glad you found my little corner of the internet :)
Found this like via Facebook and already don’t feel quite so alone. I am 42 and the end of last year, I was diagnosed with Lymphedema. I guess I am pretty blessed since it appear that It has been caught early as really the only signs were painless swollen ankles and constant painful feet on walking long distances and my legs looking pretty much like they had been punched constantly. Doctor said it was just bad circulation and it was only at my insistance on being looked at by the right people; that he told me the bad news. I am afraid that I broke down into tears as I saw my sexuality disappear! Thankfully, (I live in France), they make super sexy compression stockings and lol even my sister – who expected really horrible brown/biege colour, was astounded with how fantastic they look. My big issue really is the heat and I am afraid I am naughty in that I don’t wear them when too hot, but find I have to raise my feet and actually see the swelling around my ankles calm down, so really I am one of the lucky ones in that my legs look normal and can wear dresses and skirts still, but I do confess to suffering from vanity and am ashamed of the colour of my legs!!
I’m really glad you found the site, Suzanne! You’re never alone, despite it seeming that way. Lymphedema can be such a lonely disease – it makes you isolate away from others, and you rarely meet other people who have it. But you have now, hooray!
It sounds like you’ve got a healthy outlook towards your legs (and your sexy compression stockings probably help that, too)! I hope you keep that up, because that’s almost as important as wearing your garments :)
Hello! Alexa,
Thank you! for starting this blog. I’m a 55yr. old African-American woman with lymphedema. I’ve had it ever since I was nine years old. It runs on my mom side of the family, she has it, her mother had it and so did my aunt. I had the dye test when I was young to find out why the swelling in my foot didn’t go down when I sprained it playing at school. It’s so nice to find others who are have lymphedema and all the information on the internet to help us with this.
We can share all our information and finding about this disease. I find now since I’ve gained so much weight and the foods I eat make me feel sluggish. I want start a better diet especially lighter food and I will invest in that “Nutribullet” to make healthy fruit & veggie drinks. Also I join “CURVES” to helped with my circulation and health.
Hi, Erma!
I’m so glad you found the Lymphie Life. It sounds like you’re being very proactive in taking care of yourself by watching your health and weight – that’s wonderful! I wish you all the best and you’re welcome to keep us posted on how things are working out for you!
Alexa
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