Walk For Lymphedema

It's been a while since my last post. I do apologize. I have been pre-occupied with my first baby who was born in January. Many of you may be wondering if the pregnancy affected my lymphedema at all. I am happy to say that there was no significant difference in  the amount of swelling in my legs until the last month of my pregnancy. My daughter arrived at 37 weeks weighing 8 pounds, 2.2 ounces, 19 inches. I had a natural childbirth. No drugs, just me, myself, and I feeling every bit of the labor and pushing my hardest to get my daughter out. After she was born, my legs hurt for about a month - mostly my knees, but I don't think that had anything to do with the lymphedema.

Now 6 month later, I am trying to get back into shape. I need to loose a few to get back to the weight which makes my legs feel the best. I'm sure everyone can agree that extra weight is definitely not good for people who have lymphedema.

Anyway, my main reason for this post is to inform all of you that I will be involved in the Lymphatic Research Foundation's Walk for Lymphedema and Lymphatic Diseases. On Saturday, September 15, 2012, I will be walking to make people aware of lymphedema and to raise money to fund further studies of the lymphatic system. My fundraising handout is below. You may copy/paste it and send it to anyone you know who may be interested in donating to this great cause. Thank you.

Team Janet 2012 Fundraising Page

Hello,

My name is Janet Gorman and I have been living with Primary Lymphedema in both legs from hips to toes since my early teens. It has been a difficult journey at times but I am fortunate to have the love and support of my family and friends. Now in my mid-30’s, Lymphedema has never stopped me from pursuing my dreams and having a beautiful, healthy baby girl this past January.

The Lymphatic Research Foundation is a 501(c)(3) not-for profit organization whose mission is to advance research of the lymphatic system and to find the cause of and cure for lymphatic diseases, lymphedema, and related disorders. My goal for this fundraising walk is to not only raise awareness, but also raise money for LRF in hopes to one day get a better understanding of this disease and ultimately find a cure for Lymphedema.

This will be the first fundraiser walk for me and I am excited to be a part of it. I hope to reach and possibly exceed my fundraising goal of $500. I thank all who will donate and welcome anyone who wants to walk with me on Saturday, September 15^th in Eisenhower Park, East Meadow, NY.

Please visit my fundraising page at http://lymphatic.donorpages.com/LRFWALK2012/TeamJanet2012/. Please help me with my fundraising by contributing to this great cause! Donations can be made directly on my fundraising page. Information about the Lymphatic Research Foundation and details about this walk can also be located at the website above.

Lymph Girl Stories: Lauren

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?

Lauren: I draw attention to other parts of my body to distract from the varied leg sizes. If someone looks at my legs, I look down then look at them with an 'OMG, what's happened to my leg' expression, which causes them to be more embarrassed than me. 

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

Lauren: Nobody in my family (as far as I'm aware). My immediate close friends don't but know enough about the condition. Also have made friends and acquaintances with fellow sufferers.  

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.

Lymph Girl Stories: Barb

Lymph Girl Stories

Barb's Story

Our next Lymph Girl is a Snowbird, spending half her time in New York and the other half in Florida. Being from New York myself, I can understand why she would want to avoid our winters here, although it hasn't been that bad so far. I think we had snow by this time last year.

Here is Barb's story:

Lymph Girl: How old are you?

Barb: 63

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

Barb: US-FL &NY

Lymph Girl: Please tell us a little about yourself.

Barb: Retired library aide.  Married 41 years.  One married son w/ 2 sons.  One stepdaughter w/ one son. Snowbird.  Live up north in summer & in south winters.  Love friends, walking, reading &  Red Hat Ladies.  

Lymph Girl: What type of lymphedema do you have?

Barb: Primary Lymphedema

Lymph Girl: What stage of lymphedema are you in?

Barb: 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?

Barb: Both legs from hips to ankles.

Lymph Girl: Do you know how you got lymphedema?

Barb: I think it started after I started running at age 30. Legs started to swell almost immediately.  Couldn't figure out why I was gaining weight.  Might have been born with it or could be a result of abdominal surgeries that affected lymphy nodes.  No one is really sure.  

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

Barb: Right around age 30.

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

Barb: Not much.  Once when I told one doctor my legs were very heavy, she  put me on diet pills.  My current doctor up north checked my thyroid  because of the swelling, but didn't say much else.

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

Barb: I actually diagnosed myself after seeing a program on Discovery Health Channel in 2007. Did online research.  Looked for a therapist in Florida who could treat it.  Asked my doctor in FLA for a referral which i got right away.  30 years after developing it is the short answer.

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

Barb: None. 

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

Barb: 2 hours/day; 5 days/week; 6 weeks--3 weeks each leg

Lymph Girl: What did they do during your treatment?

Barb: Manual lymph drainage, wrapping--left leg treated first. She showed me how to do the MLD and wrapping.  Also special exercises each leg.  Wrapped a night.

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

Barb: I wear compression stockings Medi brand. Thigh higs, I think 50mmHg.  Toeless stockings.  My feet are unaffected.

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

Barb: I'm very glad to say yes it does.

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

Barb: I also have an electric pump which I try to use every night.  One hour each leg.

Lymph Girl: Does having lymphedema cause you pain?

Barb: Sometimes my legs ache, but that's extreme.

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

Barb: No.

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?

Barb: Exercise once a day after putting on compression stockings. Lie on back, leg exercises to promote muscles pumping of fluid.  Try to walk daily which also helps.

Lymph Girl: How has lymphedema affected your life?

Barb: My legs are swollen, and misshapen.  The calves are very heavy.  I need to lose weight, and am working on it.  I think the lympedema makes it harder to do that. If on my feet a long time, my legs do ache very much.

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

Barb: People do stare at my legs, but I've tried to get over that since I now know what I have.

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

Barb: Everyone has something to deal with.  By this age, I think of having a "condition".  The compression stockings make me feel better.  That is worth a few stares from strangers.  My friends never cared how I look.  Some young people have asked and I've used it as a chance to educate. I'm grateful my legs "work" to be truthful.  It bothers me when I can't move fast.

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

Barb: My sister had it, and I had aunts with it.  This was all before we knew what it was. 

Lymph Girl: Has lymphedema stopped you from accomplishing anything?

Barb: Not really. 

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

Barb: I've stopped being self-conscious in public since I found out I have it. I know now I don't just have fat legs.  

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?

Barb: Yes, I wear shorts with my compression stockings.  I don't worry about how I look anymore in public.

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

Barb: Pants are sometimes hard to fit.

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

Barb: Don't think I'm equipped to offer advice at this point.  Except to say do the exercises and compression.  Wrap at night and wear the stockings. You will feel better.  Try not to worry about how it looks.  It's a health issue. That's more important than appearance.

Thank you Barb for filling out the questionnaire and sharing your story. I know sometimes it is easier said than done, but your advice is right on point. We cannot afford to worry a lot about how we look in our garments. This is a health issue and we all need to stay as healthy as we can so we don't cause other problems.

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.