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Simply Beautiful Living with Lymphedema!

PostPosted: Fri May 07, 2010 7:05 pm
by Debra
I was born with congenital LE in my left thigh, leg, ankle, and foot in 1971. Back then none of the doctor's my parents took me to had a clue as to what was causing the swelling in my leg. I spent most of my childhood being shuffled from one hospital to another only to hear there is nothing that can be done to correct the swelling. By the time I became a pre-teen I was introduced to MLD and compression garments. As a pre-teenage girlie girl I wanted the shoes and clothing all the other girls were wearing and of course I wanted the beautiful/normal legs as well. Luckily I had two very down to earth parents who could see that the LE was not only affecting me physically but mentally as well. My parents approach was something as a child I didn't understand but now as an adult I am truly grateful for. They simply encouraged me to embrace the LE as a part of who I am and not to dwell on will I ever be "normal". Don't get me wrong I don't want anyone out there to think for a minute that growing up with LE was easy for me. I was teased almost everyday I attended school, stared at by strangers as if I was a circus freak whenever I wore something that showed my legs, had my fare share of infections which always included being admitted into the hospital, and of course my favorite; having doctors bring in groups of 1st year residents/students just to look at me like I was some medical mystery whenever I was admitted into the hospital. And to top it all of off I have 5 brothers and 7 sisters who barely ever had a common cold. So when it was time for me to attend High School my Mom and Dad said in so many words "The Pitty Party" is over and it was time for me to make a decision. I could continue to feel sorry for myself and use my LE as a crutch or go out and enjoy life with confidence. I remember my Dad saying "If you believe you are all of that then so will everyone else!" and at that very moment I decided to face the condition head on and enjoy what life had to offer. I became a cheerleader in High School and had plenty of boyfriends. I was extermely popular and was always throwing house parties on the weekends. During my HS years my parents continued to search for a cure for my LE and encouraged me to take care of my skin, continue the wrapping and to wear my compression stocking which I did very inconsistently as a teenager. Once I became a young adult I still had to deal with infections and the swelling. By this time, my LE had progressed to stage 2 and the medical cost was now my responsibility. As a young adult I did not have the money to replace my compression stockings as frequently as I should have and I definately was not wrapping like I should have either but I always made sure I took excellent care of my skin. I started to wear clothing and shoes that complimented me instead of items that were the latest trend. I continued to workout and take multi-vitamins. Fast forward to 2010-my thighs are now the same size, my calf is only slightly larger than the other, and the LE is only present in the ankle and foot. I wear a reid sleeve most nights and around the house when doing chores. I wear my knee high compression stocking during the day into the evening. I use baby oil to moisturize my skin daily. I get a B12 shot once a month for energy. I limit my salt intake and I try to keep a positive outlook on life in general. I take procautions to prevent infections but I also keep anitbotics on hand just incase one should occure. I have 4 children all who are LE free and a wonderful husband that reminds me all the time how beautiful I am. When people stare I simply ask them if they would like to know what's wrong with my leg in a friendly manor and most of the time they say yes. After I have educated the person I always think to myself that's one more person who now knows about LE! I still have bad days but it rarely has anything to do with my LE. I am sharing this with you because I have learned over my 39 years of life that by me choosing to have a positive attitude about my LE it has helped me to coupe with the condition and to enjoy the life I have been given. I know how hard it can be living with LE both physically and mentally and how sometimes it can seem like you are out there all alone with no who truly understands your fustration. You're not alone! So stay positive and continue to share! :D

Re: Simply Beautiful Living with Lymphedema!

PostPosted: Sun May 09, 2010 10:09 am
by patoco
Hi Debra

A really special welcome to our family here and what a beautiful, encouraging post.

You and I have very similar experiences, both with LE and with our parents. I was raised by an aunt and uncle who pretty much handled the situation like yours. The older I've gotten, the more I have learned to appreciate and thank God for their wisdom.

As my LE progressed during childhood, I gradually was taken out of so many activities that I loved doing. No more PE, soccer, football - lots of sports that I loved. But, every time I lost something, my wonderful aunt guided me into other activities. I was also raised never to think that having LE was an excuse for either self-pity or failure in life. Infact, it was well into my adulthood that I actually realized for the first time that,"wow - I have a disability."

I always had lots of friends too, was involved in a zillion things in school - band, choir, orchestra, clubs, student council etc.
I went to two colleges and was student body president of both - in one, I was even re-elected for a second term. Only two people in the 64 year history have been able to do that. I was even able to study in Switzerland for a short time. My involvments continued into adulthood as well and I was very active in civic groups, one of the political parties, church on and on.

My life has been rich and full with many many wonderful memories of all the things I've been able to do and accomplish. I have two grown children and now a little grandson - none of which has LE. Only one of my nieces and nephews have LE and he so far is the only one in his entire generation (all cousins) that has it.

One of my favorite sayings is "Life is a celebration of what we can do, not a requiem of that which we can't."

Yes, it's been hard, there have been many tears along the way and I too had those who made fun of me. That stuff is always going to be there and we do have a choice in whether or not it (and LE) will dominate us, ruin of lives or to choose to live life to the the ole movie expression "damn the torpedos, full steam ahead." :D

Quitting and failure simply is not an option.

Again welcome - I am so glad you joined and posted :!: :!: :!:


Re: Simply Beautiful Living with Lymphedema!

PostPosted: Mon May 10, 2010 1:55 pm
by gottalovesj
Thank you for this post--it brought me to tears!! It definetly makes me feel A LOT less alone and knowing that someone can sympathize with what I'm currently going through. Its so hard to be made fun of all throughout High School just as a normal person and then to have something like this happen right after that--its like I've had no time to grow into and appreciate my body as a woman--wear high heels, skirts, things that make you feel pretty--when you're fighting with your body. Thank you for your inspiration Debra.
<3 Amanda

Re: Simply Beautiful Living with Lymphedema!

PostPosted: Mon May 10, 2010 4:14 pm
by Cassie
Debra, you are beautiful -- and you make me feel beautiful too. I needed that reminder that a smile, a listening ear, a friendly gesture, a confident attitude all outshine the size of my limbs or the nutty garments I wear on them.

Thank you (and Pat too)!

Re: Simply Beautiful Living with Lymphedema!

PostPosted: Wed Jun 02, 2010 3:19 pm
by annelicious
My name is Annie. I have been living with lymphedema for the past 13 years. Since i was 15 years of age. I am now 28.
How i wish i had confidence as yours. Lympedema affeceted me as young person. I did not follow a career i want. I was a Chemist but then i had to resign since my legs could not carry me. Both my feet and legs are swollen and it affects me since today's looks are important. My heart got broken 3 years ago
and i find it hard to give my heart away and yes lympedema was the cause. I feel so lonely at the age of 28 and so scared that no one will ever love me

I fall into depression most of the time. I wish to get over it and just make peace with my condition but u find it hard. I am working on it. Nobody in my family or amongst my friends know what lympedema is. I feel so alone

Re: Simply Beautiful Living with Lymphedema!

PostPosted: Thu Jun 03, 2010 8:45 am
by patoco
Hi Anne

I do understand how you are feeling and it breaks my heart too. I also do know that things can turn around for you too.

Kinda full of questions. Have you had any type of treatment for the LE? Do you have a LE therapist? What all has been done?

The second bunch of questions involve in if you have been able to participate in any type of live LE support group and/or have had any counselling to help you deal with your feelings. Anne, there simply is no shame in asking for input from a counsellor. Listen, I've done that a number of times.

When my health totally broke, I became literally useless. I couldn't even get around my own house, much less work, shop or garden or anything I loved to do. talk about depression and feeling like my life was over. Wow, I really went through some emotional ups and downs. I really felt that I simply had no reason to even continue being alive. I spent one afternoon with the counselor from my cancer clinic and it really really was a big help.

Lymphedema does not make us who we are. It is only a part of who and what we are. Who we are is really defined by the person we are in the inner heart and soul - by our values and how we live life with those values.
Inside - what motivates you? Take some time and think about that and even list them out.

What are your strengths, talents, gifts? I would suspect that you have bunches of them.
How do you treat people, react to people, get along with people? That in itself either draws or pushed people away.

What is it that makes you, you? OK, you have LE and probably don't like your body, trust me neither do I, but is your body your defining asset? Is that all you have to offer? I seriously doubt it.

There's a lot to think about here, so I'll just close for now with one more thought.

OK, so you feel no one will ever love you.

Let me ask you the reverse. Why would someone not want to fall in love with you?

Super super hugs :!: :!: :!: :!:


Re: Simply Beautiful Living with Lymphedema!

PostPosted: Fri Jun 04, 2010 8:27 am
by annelicious
Thanks Pat. I will work around that. There are things that i like doing. I like writing poems. I do that alot. It helps with the depression. But this time around none of the things seems to be working. I have seen a counsellor, it helps somehow but i think healing comes from within. So i have been trying to do that. I think it so frustrating to live with a chronic disease when you are young not that it is easy when you are older. I go through alot of emotions that i just do not know how i should deal with. I will keep the fight till i see what works for me best. I choose Computer science after a degree in Chemistry and Maths. My choice was more based on the market available in my country, i live in a small country.

Thanks for the encouraging words it always helps to talk to someone who is going thru the same condition as you.

Re: Simply Beautiful Living with Lymphedema!

PostPosted: Fri Jun 04, 2010 9:24 am
by patoco
Hey Anne

I've really been thinking a lot about your post. I do so understand what you are going through as my lymphedema was clearly evident from the moment of my birth, and I have lived with lymphoma now too for some 15 years. Due to the state of my immune system, i was never able to receive the protocol treatment. We did try radiation and Rituxan. that was a total disaster and we suspect strongly that it was the Rituxan that caused the all-over lymphedema to kick in.

One of the real problems we face in todays world is the Hollywood myth. This myth states that if you are externally beautiful and/or rich and/or both, then surely happiness will follow. The problem is, this is a total fallacy. There just isn't a shed of proof to support that concept. My question would be, if that were true then why is Hollywood so filled with drug and alcohol abuse, marriages that last for a second, and even suicides? So many many of these people hop from bed to bed, desperately trying to find that perfect mate, love and happiness and they drug or drink themselves to death in an attempt to get rid of the pain of loneliness. We really need to stop believing in or listening to this false message.

it is interesting too that when you study marriages that have last 40, 50 years or even longer (I once knew a couple that was married for 68 years) being rich and beautiful never even enters into the picture.

it all goes back to who we are on the inside. This includes how we think, how we treat others, our values, our we perceive ourselves and what exactly motivates us in life.

You know Anne, I can only speak as a guy, but the very first thing I notice about a person is their eyes . I want to see inner beauty, strength, compassion, warmth. If I don't see that, then frankly, nothing else matters to me - LOL...the book is closed.

Secondly, I look at the persons countenance. This can easily be defined as the expressions in your face, your appearance, what you project to the people you meet. A person's countenance tells me immediately whether or not they have any self pride in their appearance. I don't care how old or young you are; or what medical condition you might have, I still look for that as that speaks volumes about how they feel about themselves and the world.

Also, believe it or not what you are feeling is actually what most young people feel anyway. I always think of my own daughter. As a teen she fretted about this too. She would get so blue and think she would never have a boyfriend or someone to fall in love with. Here she is now with a great husband and so far one lovely little boy. I think it probably is something that just goes along with being young and thinking about what the future holds. So, in that sense millions of other young people everywhere share your feelings and frustrations.

Anyway.....just some additional thoughts. :wink:


Re: Simply Beautiful Living with Lymphedema!

PostPosted: Sat Jun 05, 2010 10:14 am
by annelicious
Thank you Pat. I will hold onto my inner strength

Re: Simply Beautiful Living with Lymphedema!

PostPosted: Fri Jul 30, 2010 10:52 pm
by Debra
Dear Anne, oh if I had a nickle for everytime I felt like you when I was a young woman of your age I would be RICH! Pat is right on point with all the wonderful advise he shared with you but if I may add from a woman's point of view a little of my own. First, stop looking at your LE as if it is the ugliest thing you have ever seen. You are an orginal work of art, rare in beauty and style! When you look at a part of yourself as undesirable than others will pick up on that and will look at you in that same fashion! You have more control over how others perceive you than you think! Just like any other woman out there in search of a mate we too must do things to enhance our inner and outer beauty in order to attrack and keep the mate we are seeking. Some of those things could include wearing clothing and shoes that compliment our body type, items that are still a little trendy but set us above the pack and worn always with confidence! Second, find a hair stylist that is cool and knows all the latest trends and get your hair done as often as you can afford it! If you can't afford to go to a salon then learn how to do it yourself! Treat yourself to a Spa Day-you will be surprized how this will help your self-esteem! Third, stand up straight-stop moopping around and smile more. If your teeth aren't bright white or need some work than make it happen/get it done! A beautiful smile can open a lot of doors. Forth, if you are overweight now is the time to do something about it! LE does not give you a license to neglect your physical health or to have bad eating habits! Working out will increase your energy levels and decrease your stress levels. Fifth, please stop wasting so much time and energy on trying to fit in with everyone else-Champions are not like other athelets, Grammy Award Winning Musicians are not like other musicians,Top Models are not like other models and Anne you are not like other people! And at last check I believe those who standout from the crowd are usually the ones who get noticed! Anne I know you must be saying wow I didn't expect such direct feedback from a stranger but I wish, oh how I wish Lymphedema People were around when I was 28 or if I had someone who could mentor me through the rough times that could relate to me from a LE point of view!

Anne, my leg gets so big and hard that I can barely walk at times! I have had my leg swell so bad that I had to cut my pants off just to get my leg out but I choose to continue on no matter how difficult it may be. When I go to get my pedicures every two weeks I see the other woman glance down at my foot with a look on their face that reads "thank god those aren't my feet!" and when I'm in the salon I can feel the stares there as well but you know what? I do all that pampering for me not for other people to accept me and I will not EVER give anyone permission to take my joy or give them the right to make me feel inferior to them! I walk with a purpose and I am confident in my delivery. Life is way too short and I refuse to waste one second on what others think or feeling sorry for myself. Each one of us were put on this planet for a reason and I truly believe that if you decide today to change your personal attitude towards your LE you will start to attract the kind of mates you want in your life and find true inner happiness. I've never met you but I already know that you are a beautiful person who is ready to experience all the happiness that is patiently waiting for you! Don't be scared! That's your happiness and no one else can claim it but you! Plus the only difference between people with LE and those without is you can see what is wrong with us we just can't see what's wrong with them and believe me there is something wrong with them because no one is perfect. :wink:

Re: Simply Beautiful Living with Lymphedema!

PostPosted: Fri Jul 30, 2010 11:16 pm
by Debra
To all the others who have responded to my post first let me apologize for the delay in my response back to you! Thank you for the kind words and for sharing your stories with me. We are all in this together and together we will all make it!

Re: Simply Beautiful Living with Lymphedema!

PostPosted: Sun Aug 15, 2010 11:51 am
by patoco
Hi Debra

Keep meaning to drop a note in response to you post to Anne. LOL...thank you sooooo much :D :D , I really have to admit that no matter what I may say or tried to say, I was hoping for the "woman's touch" on this. I struggled in how to and what to say as my feelings were as both a dad and a LE patient. Your post is fantastic too and I wish every young woman facing LE could read it.

Thanks again :!: :!:


Re: Simply Beautiful Living with Lymphedema!

PostPosted: Mon Oct 11, 2010 12:25 am
by fineline888
Does this group belong to a chat room some where? Do we have a yahoo group or other place where we can chat in real time with other people with lymphedema? Thanks! :D

Re: Simply Beautiful Living with Lymphedema!

PostPosted: Mon Oct 11, 2010 9:18 am
by patoco
Hey Feline

We don't have a chatroom, but we do sponsor a number of Yahoo support groups.

You can find a list of these on this page:


Due to my health, I've had to cut back on most of the sites you'll see. But scroll down to the section that lists the support groups. Our largest and most active is Advocates for Lymphedema ... ymphedema/

I'll look forward to seeing you there! :)