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.

Lymph Girl Stories: Gillian

Lymph Girl Stories

Gillian's Story

I am so pleased that there are other lymph girls out there that want to share their story. I am grateful to the internet for this outlet and hope I get many more lymphers who are willing to open up. This next lymph girl hails from the UK and I would like to wish her a congratulations on being newly married. It is such a wonderful feeling when you know there is someone who is going to be by your side no matter what (excluding family). I thank the Gods everyday for my husband. With all my medical issues, he must truly love me, 'cause why else would someone put up with all the problems unless it's your family? Love is truly blind to the physical and sees only your heart and soul.

Here is Gillian's story:

Lymph Girl: How old are you?

Gillian: 33

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

Gillian: Birmingham.UK

Lymph Girl: Please tell us a little about yourself.

Gillian: I'm newly married, no kids (yet, although we're working on it!) and I work teaching sex and relationships education to young people with learning and physical disabilities.

Lymph Girl: What type of lymphedema do you have?

Gillian: Primary Lymphedema

Lymph Girl: What stage of lymphedema are you in?

Gillian: Stage 1 - an early accumulation of fluid that is relatively high in protein content. There is visible swelling with protein-rich lymph. This swelling can be temporarily reduced by elevation of the limb; however, the swelling soon returns when the limb is returned to a normal position. The swollen tissues are soft and pitting edema is present.

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

Gillian: Both of my legs from the hips down.  I also have genital oedema and, on bad days, my hands swell up.

Lymph Girl: Do you know how you got lymphedema?

Gillian: I have always had it, I just don't have that many lymphatic vessels in my legs.  t wasn't apparent until I was in my early teens, and even then my mom used to tell me that my leg was swollen because I kept sitting on it!  

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

Gillian: For me, like so many others, it was at the onset of puberty, and we noticed that my left leg (still my worst) was a different size to the right.  Not extreme, but noticeable.

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

Gillian: Ah well - all the usual; that I was overweight, and that I was causing the swelling by sitting on my leg when I sat down (which I didn't!).

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

Gillian: I had a serious bout of cellulitis about six or seven years ago and ended up in hospital on IV antibiotics, but I had never heard of lymphoedema and it was never followed up. Then in 2007 I had a serious, life-threatening episode of cellulitis in both legs, nearly losing my left one to it; when I came out of hospital I was referred to a dermatologist (as it was presumed that infected exzema had caused the cellulitis).  He took one look at my legs and referred me to a specialist lymphoedema centre based at a specialist cancer care provider.

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

Gillian: I had the scans of my legs done, which showed my complete lack of lymphatic vessels. 

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

Gillian: I initially had decongestive therapy - wrapping and MLD, which I had on a daily basis for about six or seven weeks.  They did both legs at once which apparently is quite unusual and they only did that because I agreed to move home to my parents whilst it was being done, as I was more or less immobile and couldn't walk unassisted.

Lymph Girl: What did they do during your treatment?

Gillian: So, they used the Lymph Assist machine every day for about two hours - the machine that looks like the wrong trousers! - and wrapped my legs.  At the weekends I stayed wrapped.  After the initial six or so weeks of it being every day I started to go every other day, and was allowed to take all the bandages and foam off so I could shower before going to the centre to be re-wrapped.

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

Gillian: I wear Medi class 4 thigh highs, open toe, on both legs with separate compression gloves for my toes, on both feet.  I wear them every day.

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

Gillian: I don't have insurance; my treatment is on the NHS mercifully.  I do pay prescription charges for my compression garments and although that can mount up when I buy more than one pair, I am still very grateful that there is a set fee via the NHS.

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

Gillian: I try to walk as much as possible, and work on my weight.  My husband helps if I am very swollen with MLD.  I also always sit with my feet up at home.

Lymph Girl: Does having lymphedema cause you pain?

Gillian: Yes.

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

Gillian: Yes, twice; both occasions I believe it was via simple skin complaints (I have eczema and am very prone to minor infections).  I ended up in hospital both times, the first occasion for just over a week and the second time for three weeks.

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?

Gillian: Just the walking, which I try to do every day.  I have learned to swim - I learned last year before we went on our honeymoon - but I am scared of the water (hence I never learned before) and I don't enjoy it.  I am hoping to buy a bike.

Lymph Girl: How has lymphedema affected your life?

Gillian: Well, my legs hurt pretty much all the time.  I can't wear pretty shoes as it affects both my feet, and I struggle to get shoes/boots that fit properly.  I don't wear skirts unless it's winter when I can wear long boots.  So those are the cosmetic reasons.  Physically, I am fortunate in that my husband is super supportive, but I can't deny that the genital oedema causes some issues, again more cosmetic than functional (usually anyway), but I am basically the wrong shape, and there's not much getting away from that.  I look weird in my underwear, without going into great detail.  I certainly can't wear a short top with my jeans - I need something that covers my crotch.

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

Gillian: Yes.  We took our honeymoon in Florida this summer and after some considerable weightloss and flushed with the throes of new love I wore a pair of shorts to Disney World.  We had been there for ten minutes when some girl behind us in a queue said very loudly, "Ewww....what's wrong with her leg, eww, look at that!" to her boyfriend and I felt very angry and upset.  That was genuinely the first time it has ever happened - at the age of 33, I suppose that's good going.

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

Gillian: I have a very supportive husband and I am not ashamed of talking about my different body with people that want to know.

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

Gillian: I have a friend who has lipidema as well as lymphoedema, who has a terrible time with it and who I admire and respect deeply.  But no immediate family - I had never even heard of it before I was diagnosed with it. 

Lymph Girl: Has lymphedema stopped you from accomplishing anything?

Gillian: Absolutely not! 

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

Gillian: No - I am fortunate in that I am very confident and have enough positive self-regard and self-belief that I don't think anything should hold you back - and in my case, I was absolutely sure it wasn't going to be my bloody swollen 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?

Gillian: I can't really avoid showing my legs really.  I just get on with it.  I'm more conscious of the genital oedema, which I mentioned above - that can make me feel very un-feminine.

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

Gillian: Yes, do I ever.  I can recommend Evans though for shoes and boots that come in very wide fits and  usually very accommodating calf widths, too.  (I don't work for Evans btw!  That was a genuine vote of confidence!)

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

Gillian: The hard truth is that it's not going to go away.  However, there ARE ways of dealing with it, and it is all to do with your approach.  Are you going to live your life with lymphoedema, or are you just going to exist?  That's all, really.  Also my other top tip is that if you're boiling in the summer, get one of those misting bottles with water in it and spray your legs through your compression stockings - takes the edge off.  My beautiful friend who has lipidema as well as lymphoedema, told me that one.

Thank you Gillian for filling out the questionnaire and sharing your story. You are right to mention that, unfortunately, there is no cure for lymphedema and it will not go away. It may make us feel self conscience at times but I hope others will learn, as you have seemed to, that we must live our lives and not let having lymphedema rule how we are to live it. 

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.