Lymph Girl Stories: Emmie

Lymph Girl Stories

Emmie's Story

Even though I wish nobody has to suffer from lymphedema, I'm glad that this next Lymph Girl filled out my questionnaire. She hails all the way from South Africa. This is a world-wide disease that should not be dismissed or ignored by the medical field and the media. I'm hoping these stories give hope to us Lymph Girls and Guys alike. If enough of us share our stories, maybe there will be some attention put on lymphedema.

Here is Emmie's story:

Lymph Girl: How old are you?

Emmie: 13

Lymph Girl: What state and/or country do you live in?

Emmie: South Africa

Lymph Girl: Please tell us a little about yourself.

Emmie: I love cooking, baking and reading! I hate shoe shopping! I'm still in primary school and play for our netball team. I have lymphedema in my left leg

Lymph Girl: What type of lymphedema do you have?

Emmie: Secondary Lymphedema

Lymph Girl: What stage of lymphedema are you in?

Emmie: Stage 2 - an increase in the swelling and a change in the tissues. Elevation of the limb will not reduce the swelling. The tissues become increasing firm due to fibrosis. Fibrosis is the formation of fine scar-like structures within the tissues that cause them to harden. Pressure against the limb produces only a slight indentation or in indentation at all. The tissue changes at this stage increase the risks of even greater swelling, fibrosis, infections, and skin problems.

Lymph Girl: Where does lymphedema affect you on your body?

Emmie: My left leg from my toes to my thigh, although I swell in different places sometimes.

Lymph Girl: Do you know how you got lymphedema?

Emmie: I had a very rare melanoma and they had to remove a lymph node in my groin so that's how I got it. It then turned out that it wasn't cancer so I was stuck with lymphedema.

Lymph Girl: At what age did the lymphedema start showing it's effects?

Emmie: I was 11 when my foot began to swell.

Lymph Girl: Before being diagnosed with lymphedema, what were doctors telling you in regards to your symptoms?

Emmie: Doctors kept telling me that I had hemihypetrophy. Which that is simply just one limb bigger than the other.

Lymph Girl: How long did it take for doctors to diagnose you with having lymphedema?

Emmie: 6 months... guess i'm lucky! 

Lymph Girl: Were any special tests done to help diagnose lymphedema? If yes, what tests?

Emmie: Nothing... I just got sent to a lymphedema doctor.

Lymph Girl: Have you been through lymphedema treatment/therapy? If yes, how long was treatment?

Emmie: I went for therapy 4 days a week for 2 hours for 2 weeks then I had to go 3 times a week for 1 and a half hour for 2 weeks then 2 times a week for one hour and then every 2 weeks for a few months.

Lymph Girl: What did they do during your treatment?

Emmie: I had a manual lymph drainage performed and wrapped.

Lymph Girl: Do you wear compression garments? If yes, what kind and how much is the compression?

Emmie: I wear mediven thigh high open toe class 3 and best of all, it's PURPLE!!! 

Lymph Girl: Does your insurance cover your treatment and/or compression garments?

Emmie: I honestly have no idea... my father does that thing...

Lymph Girl: Do you do anything special to help with the swelling?

Emmie: I eat special, some foods make me swell up... and I take tissue salts for lymphatic drainage.

Lymph Girl: Does having lymphedema cause you pain?

Emmie: Yes! I would get pain in my groin and under my arms and I get ill a lot more.

Lymph Girl: Have you ever had a cellulitis infection? If yes, what happened and do you know how you got it?

Emmie: Yes, I had it once and I have no idea how I got it but it made my swelling much worse.

Lymph Girl: Do you do any exercises to help manage lymphedema? If yes, what type of exercise and how many times per week do you do them?

Emmie: No... I do MLD instead of the exercises.

Lymph Girl: How has lymphedema affected your life?

Emmie: Well, I miss having my old life, where you're biggest worry as a 13 year old girl is how your hair looks, not how big your ankle is swollen.Where buying shoes wasn't about the strap that goes around your foot that's wrong but about the color. I miss the days when I could just run around and be me and not worry about my leg and the swelling and getting it hurt! I miss the days when people asked me "How are you?" instead of "How is your leg?" I miss the days when I only wore bandages to look like a mummy or to fake an injury! I miss going to the shops with my mum, having a ball, walking around and looking at shoes for me and not worrying about my leg and how it is swelling up! I miss being the old me... But the thing I like is having a medical excuse for not doing PE (When I'm lazy) and sometimes just sometimes, I realize the real purpose in my life and maybe just maybe I like being a Lymphie! :)

Lymph Girl: Has anyone ever made you feel embarrassed? If yes, how so?

Emmie: No not really! I have accepted the fact that I have lymphedema and if people stare I stare back at their face!

Lymph Girl: How have you learned to cope with looking different?

Emmie: yes! My father once told me that having an ugly leg and being able to tell people a story is much better than having a perfect leg and not being able to say anything about it! Since then I am fine with my looks.

Lymph Girl: Does anyone else in your family have lymphedema? Or any friends?

Emmie: No, I have only once met someone with lymphedema... 

Lymph Girl: Has lymphedema stopped you from accomplishing anything?

Emmie: I would have loved to continue my ballet classes but because of the swelling and my op I can't do that any more. 

Lymph Girl: Have you accomplished something that was thought to be impossible because of having lymphedema?

Emmie: yes! I made my netball team at school! 

Lymph Girl: Do you wear shorts, short skirts, or short dresses? If yes, how do you feel when you go into public? If no, why?

Emmie: I love wearing short dresses! And our school uniform is a skirt! I don't mind if people stare... I'm just being me!

Lymph Girl: Do you have a hard time buying clothes/shoes that fit?

Emmie: I hate shoe shopping! We rarely find shoes that fit me because I am a size 11 UK so my feet are massive and having lymphedema doesn't really help. I can't wear certain types of pants so buying pants is also a pian!

Lymph Girl: Do you have any advice for other people living with lymphedema who may be struggling with coping?

Emmie: Hold on! Stay positive! Be yourself! Don't do anything stupid that will make you feel bad or swell up. Tell people about your struggles and don't worry if people stare because people are just people and they are going to stare and make a scene but you know what, you don't have to worry! Life's too short to wear ugly clothes to hide compression garments! Normally, if I wear my stocking, I tell everyone that my tan beats the hell out of theirs! You are gonna be just fine, what ever happens! Keep your head held high and always wear your smiles, scars and lymphedema like the most expensive jewelry! ♥ 

Emmie, I want to thank you very much for filling out the Q&A. Not only did you have to struggle through the possibility of having cancer (thank God it was benign) but now you are struggling with lymphedema because of that. Stay strong and continue to be positive. 

Thank you all for reading. Lymph Girl Stories is open to anyone who has lymphedema. Don't be shy, share your story today! Just go to the Questionnaire section of this blog, fill out the questions, and submit. Let's help each other understand that we are not alone.

Lymph Girl Stories: Emily

Lymph Girl Stories

Emily's Story

I was amazed by this young lady's enthusiasm for life that I had to have her story be the first in this series. She is truly an inspiration to all of us living with lymphedema and for those who are not. It seems that nothing is going to stop her from living her life the way she would if she never had lymphedema. With the support of her family and friends, she can and will accomplish anything she sets her mind to. We should all strive to be this confident in our daily lives regardless of our challenges with our affected limb(s).

Here is Emily's story:

Lymph Girl: How old are you?

Emily: 15

Lymph Girl: What state and/or country do you live in?

Emily: Illinois, USA

Lymph Girl: Please tell us a little about yourself.

Emily: One of my favorite things to do is dance. It is my passion, I love it so much. My number one love in my life is Jesus, my heart belongs to him. I am a freshman and I am Vice President of my class. I enjoy hanging out with my friends, going to football games, and driving! I have the best family I could ever ask for. I have amazing parents, and I have a brother and sister who are both in college and I also have the most wonderful dog in the universe. And I also have Lymphedema.

Lymph Girl: What type of lymphedema do you have?

Emily: Primary Lymphedema

Lymph Girl: What stage of lymphedema are you in?

Emily: Stage 2 - an increase in the swelling and a change in the tissues. Elevation of the limb will not reduce the swelling. The tissues become increasing firm due to fibrosis. Fibrosis is the formation of fine scar-like structures within the tissues that cause them to harden. Pressure against the limb produces only a slight indentation or in indentation at all. The tissue changes at this stage increase the risks of even greater swelling, fibrosis, infections, and skin problems.

Lymph Girl: Where does lymphedema affect you on your body?

Emily: Lymphedema affects all of my right leg and right arm!

Lymph Girl: Do you know how you got lymphedema?

Emily: I was born with lymphedema.

Lymph Girl: At what age did the lymphedema start showing it's effects?

Emily: At seven years old, increase swelling in my hand and foot; pitting edema.

Lymph Girl: Before being diagnosed with lymphedema, what were doctors telling you in regards to your symptoms?

Emily: Doctors kept telling me that I had hemihypetrophy. Which that is simply just one limb bigger than the other.

Lymph Girl: How long did it take for doctors to diagnose you with having lymphedema?

Emily: It took them 7 years to diagnose me with lymphedema.

Lymph Girl: Were any special tests done to help diagnose lymphedema? If yes, what tests?

Emily: Not at first, but when I was fourteen I had a lymphoscintigraphy in all four limbs.

Lymph Girl: Have you been through lymphedema treatment/therapy? If yes, how long was treatment?

Emily: When I was seven years old I did it for 5 days a week, 3 hours each day, for 6 weeks. Then every 4 years for 3-4 weeks.

Lymph Girl: What did they do during your treatment?

Emily: During my treatment, I had manual lymph drainage performed and was wrapped everyday. And on the weekend I stayed wrapped until that following monday when I went back to therapy.

Lymph Girl: Do you wear compression garments? If yes, what kind and how much is the compression?

Emily: Yes,  and I wear Midiven thigh highs, closed toe, class 2. 

Lymph Girl: Does your insurance cover your treatment and/or compression garments?

Emily: Yes, 80% of it all.

Lymph Girl: Do you do anything special to help with the swelling?

Emily: I use the flexy touch pump a couple times each week. Which that takes the place of massaging each night. I also try to wrap my arm and leg every night. 

Lymph Girl: Does having lymphedema cause you pain?

Emily: None at all! 

Lymph Girl: Have you ever had a cellulitis infection? If yes, what happened and do you know how you got it?

Emily: I had it on my great toe, and I had to have surgery. I got it from an ingrown toe nail.

Lymph Girl: Do you do any exercises to help manage lymphedema? If yes, what type of exercise and how many times per week do you do them?

Emily: I do not usally do any exercises to help manage lymphedema but I am planning to start doing some exercises that I think that may help, like running on the treadmill!

Lymph Girl: How has lymphedema affected your life?

Emily: Lymphedema has made a huge impact on my life. Emotionally, I have had many ups and downs with it all. I feel like lymphedema has changed me for the better. I believe that if I didn't have lymphedema then I wouldn't be as strong as a person I am now. It's made my life difficult to handle but I am so lucky to have the people I have to comfort me each day while handling it. 

Lymph Girl: Has anyone ever made you feel embarrassed? If yes, how so?

Emily: I've never actually had that feeling of embarrassment when it comes to my Lymphedema. I've accepted myself the way I was from the very beginning and that's how I am today.

Lymph Girl: How have you learned to cope with looking different?

Emily: Like I said, I've accepted myself the way that I am. So yes, I have learned to cope with looking different. It gets hard at times but I don't let myself get too down because this is how God made me and I am happy with the way that I am. 

Lymph Girl: Does anyone else in your family have lymphedema? Or any friends?

Emily: I've seen and met people who have lymphedema and now are my friends. But no one in my family has lymphedema, except for my grandma who recently just got lymphedema from when she had surgery for her breast cancer. She has a little spot of lymphedema on her shoulder. I do not have any friends who have lymphedema! 

Lymph Girl: Has lymphedema stopped you from accomplishing anything?

Emily: I am happy to say that lymphedema hasn't stopped me from accomplishing anything. Last year, I worked really hard to get dancer of the year at the studio I go to, and my work paid off and I ended up getting that award. That really gave me that confidence that I can do anything that anybody else can do.

Lymph Girl: Have you accomplished something that was thought to be impossible because of having lymphedema?

Emily: I have not yet accomplished something that was thought to be impossible because of having lymphedema. As far as right now though, I do have a goal that I'm working toward. Which that is trying out for the high school dance team. I have been rejected twice already but I am not going to give up. I know it's going to take 3x the work than everybody else but I just know that in the long run it's going to be totally worth it!

Lymph Girl: Do you wear shorts, short skirts, or short dresses? If yes, how do you feel when you go into public? If no, why?

Emily: Yes, I wear shorts, short skirts, short dresses, anything any other teenage girl would wear. I am very comfortable with my body. And I'm rarely ashamed of it. Almost all the time when I go out in public, people stare but I tend to just ignore it because in this situation, I don't care what people think about me or what they have to say about it. 

Lymph Girl: Do you have a hard time buying clothes/shoes that fit?

Emily: My mom and I have a terrible time trying to find shoes that will fit my right foot and my tiny left foot. What my mom and I usually end up doing is buying two pair of shoes that are two different sizes.  The clothes aren't so much an issue. Finding shirts to fit my arm is not so much a problem than trying to find jeans to fit my leg. 

Lymph Girl: Do you have any advice for other people living with lymphedema who may be struggling with coping?

Emily: If you are struggling with coping with lymphedema, my advice to you is that just don't let it stop you from living your life as you would without lymphedema. Life is way too short to be stressing about it, because you really are only here for a short amount of time and you should really be living your days to the fullest each and every day. Just remember that you're not alone and there's many of us with lymphedema out there who would love to get to talk to you. If you can figure out a way to accept yourself the way you are, you're going to be just fine. :) 

Great advice Emily! Sounds like you've got things figured out, and at only 15 years old. I want to thank you very much for filling out the Q&A. We all appreciate learning about your life with lymphedema. 

I hope this story has inspired some of us to go out and accomplish our goals in life regardless of our struggles with lymphedema. We cannot let this disease get the better of us. 

Thank you all for reading. Lymph Girl Stories is open to anyone who has lymphedema. Don't be shy, share your story today! Just go to the Questionnaire section of this blog, fill out the questions, and submit. Let's help each other understand that we are not alone.

I will be posting a Lymph Girl Story once a month with the first story to be posted within a couple of weeks. These stories will be in the form of Q&A from the questionnaire I have on this blog. If anyone who has lymphedema is interested in filling out the questionnaire, please do so. These Lymph Girl Stories are open to anyone who has lymphedema, female or male (even though it is called lymph girl). They are intended to help all of us understand that we are not alone in our struggles and to help us find similarities between us all.

If anyone has any questions about the questionnaire, please contact me at the email address listed on the form.

Thank you,
Janet

Pregnant with Lymphedema

I'm pregnant! Yay!! I'm at the end of my first trimester and have had no serious issues with my legs as of yet, but being pregnant does not make the lymphedema better. In fact, it can make it worse. Legs will swell with pregnancy alone, but add lymphedema to the mix and watch out! I try to wear my garments, those tight, very tight, compression garments that will help with the swelling. I try to wear them on a regular basis, but sometimes it is hard to put them on. If I'm not feeling well, the thought of struggling to put them on is not something I want to think about. With that said, I barely wore them in this first trimester. I was having all day morning sickness and couldn't really leave the couch because of it. At least I had my legs up all day, which helps slightly. When I did get them on, my legs felt good, that is until mid-day when my legs felt so restricted because of the swelling and I wanted to chop them off.

I've done some research about those women out there who have lymphedema and are or were pregnant. Not much to be found, just little things that don't really give too much information. There is this one article on the website LymphNotes that explains a little bit of what needs to be done when you are pregnant and have lymphedema. Click here to read the article. For the most part, I should be wearing my compression garments everyday, keeping my weight under control (don't gain over the recommended amount) throughout the pregnancy, and doing manual lymph drainage everyday. Duh. Things I already knew.

Now, since lymphedema is a hereditary disease, will I pass this on to our baby? I have done some research on this as well. What I've found was that I have a 50% chance of passing this gene on to our child. Hopefully lymphedema stops with me, but anything is possible. I've read a lot of stories of women with primary lymphedema who have children and none of them have developed it. So there is hope for our little one.

Why are there no lymphedema movie stars?

Come on people. Get mad. Do all the women in Hollywood have to have great legs? For once I'd like to see a woman in the spotlight with a great upper body and lymphedema in the legs. Who's gonna represent us here who have struggled with feeling alone in our swelling and big legs?

OK, that's my ranting for the day.