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.