Lymph Girl Stories
Lauren's Story
This Lymph Girl comes to us from Wales. What a beautiful country. I visited Wales on my Honeymoon back in 2009 traveling North to South and I can tell you that having lymphedema was rough there. Where I was hurting the most was in the wonderful town of Conwy. My husband and I loved it there. A small town enclosed primarily within castle walls. We walked the walls and by the time we were done, I was in so much pain and my legs were so swollen I was almost in tears. If I had to do it over, I would still have walked those walls. That's how great it was!
Here is Lauren's story:
Lymph Girl: How old are you?
Lauren: 24
Lymph Girl: What state and/or country do you live in?
Lauren: Wales-UK
Lymph Girl: Please tell us a little about yourself.
Lauren: I'm a High School English teacher from a small village in Wales. Love reading, shopping, getting a fake tan or my nails done. Typical girlie girl. Hate shoe shopping however. I live by the mantra 'A handbag always fits'.
Lymph Girl: What type of lymphedema do you have?
Lauren: Primary Lymphedema
Lymph Girl: What stage of lymphedema are you in?
Lauren: 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?
Lauren: Left leg, hip to toes.
Lymph Girl: Do you know how you got lymphedema?
Lauren: Onset during puberty. Wasn't helped by doctors performing a biopsy around my lymph glands.
Lymph Girl: At what age did the lymphedema start showing it's effects?
Lauren: First noticed at the age of 11 a slight swelling of my thigh during a skating competition, then ankle.
Lymph Girl: Before being diagnosed with lymphedema, what were doctors telling you in regards to your symptoms?
Lauren: Was told numerous times "It's just one of those things that you'll have to live with".
Lymph Girl: How long did it take for doctors to diagnose you with having lymphedema?
Lauren: Took 5 years and 3 different hospitals in Wales and England.
Lymph Girl: Were any special tests done to help diagnose lymphedema? If yes, what tests?
Lauren: Had ultrasound on left leg, MRI scans.
Lymph Girl: Have you been through lymphedema treatment/therapy? If yes, how long was treatment?
Lauren: Was never offered treatment only support garments. I have since found a holistic therapist to carry out MLD on a fortnightly basis.
Lymph Girl: What did they do during your treatment?
Lauren: Was never offered treatment so seeked out own holistic therapist. Still battling since leaving university 3 years ago to get treatment.
Lymph Girl: Do you wear compression garments? If yes, what kind and how much is the compression?
Lauren: Mediven, thigh high, open toe, custom fit, CCL2
Lymph Girl: Does your insurance cover your treatment and/or compression garments?
Lauren: Garments covered by National Health Service (NHS) in UK.
Lymph Girl: Do you do anything special to help with the swelling?
Lauren: I perform massage on my leg every other day, try to keep my alcohol intake level at a minium, try to eat vegetarian 4 days out of 7. If swelling is extremely bad will use ice/ frozen produce wrapped around my leg to aid comfort. Swimming has a positive effect, but don't go running as the impact causes increased swelling.
Lymph Girl: Does having lymphedema cause you pain?
Lauren: Sometimes, during hot weather or after excess walking. Most pain is caused in shoe stores when trying to find shoes to fit.
Lymph Girl: Have you ever had a cellulitis infection? If yes, what happened and do you know how you got it?
Lauren: Not had cellulitis.
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?
Lauren: Swimming whenever I have chance.
Lymph Girl: How has lymphedema affected your life?
Lauren: It's made me a stronger, more determined person. It's helped me become an individual who can bounce back from just about anything. OK, I can't wear skinny jeans or dresses with a pair of Kurt Geiger heels, but I've developed my own style, which I've come to love (even though I know that had I 2 legs that were the same size I could rock those skinny jeans!).
Lymph Girl: Has anyone ever made you feel embarrassed? If yes, how so?
Lauren: When I was a pupil in school, there were a lot of catty comments made about my appearance. Since then I have the ability to not worry so much.
Lymph Girl: How have you learned to cope with looking different?
Lymph Girl: Does anyone else in your family have lymphedema? Or any friends?
Lymph Girl: Has lymphedema stopped you from accomplishing anything?
Lauren: Stopped my travelling to various destinations on holiday but nothing major or life changing.
Lymph Girl: Have you accomplished something that was thought to be impossible because of having lymphedema?
Lauren: I've gained my teaching qualification which I thought was near impossible due to the condition affecting my leg, and copious amounts of time standing (which is hard going!).
Lymph Girl: Do you wear clothes that show your affected limb(s)? If yes, how do you feel when you go into public? If no, why?
Lauren: I show only so much...e.g. mini dress worn with tights (it's freezing in Wales) and knee high boots. But on holidays I'll wear swimwear with support garment on show with flip flops and kaftan etc.
I'm more conscious of people's reactions when at home and showing my legs than when abroad.
Lymph Girl: Do you have a hard time buying clothes/shoes that fit?
Lauren: YES!! I'm a UK size 3 (European 36) which means tiny feet but fat calf and ankle! Currently I buy boots in a UK size 5/6 and court shoes are easier to fit in to. Trousers are difficult to find as my thigh is also larger so instead of the UK size 6 I need to buy UK size 10 then have them taken in.
Lymph Girl: Do you have any advice for other people living with lymphedema who may be struggling with coping?
Lauren: Find what YOU feel most confident wearing and use it as a base. Don't hide behind the condition, go out there and prove everyone wrong. Success is the best confidence boost. Hold your head high then strut. NOBODY is normal, if someone pulls up your flaws, it's because they want attention drawn away from their flaws.
Thank you Lauren for filling out the questionnaire and sharing your story. You're right, nobody is perfect. I believe it is our differences that make us special.
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.
