Guestbook Number 4

Numbers 76 - 100

January 4 - May 23, 2000

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100. Nessa nessa005@yahoo.com
Waukegan,IL , USA
May 23, 2001 at 22:55

I have primary Lymphedema in both of my legs....My most frustrating thing about this is that there is no known cure for this condition. I would like to talk to others who have Lymphedema. I am a wonderful person and am willing to meet new friends. Thanks! By the Way I saved the best for last... What a wonderful site you have!

99. Ruth
May 21, 2001 at 20:14

I was treated for breast cancer in 1998 and developed lymphedema the first time about a year later. However, after about a month, it cleared up and I had not further problems until February of this year. At that time, my arm and hand swelled up and I have been battling lymphedema and the insurance company since then. I was denied treatment at a lymphedema clinic so I am going to thr rehab center at the local hospital. They are pumping my arm and hand daily for an hour with the Lymphapress. Wrapping seems to make the problem worse. Every sleeve and glove I have tried including the custom-made Elvarez by Jobst results in further swelling of the back of my hand. Where do I go from here? I feel I need to learn at least the basics of MLD. I know I need to wear compression garments but when they make it worse, I don't know which way to turn. The hotter weather also makes the swelling worse. Next month I will be on an airplane and I dread to think what that is going to do. If anyone else has had this problem with swelling on the back of the hand, how did you handle it?

98. Helen Moscatiello scapp5@aol. com
Port St. Lucie, Fl , USA
May 20, 2001 at 02:51

I have lymphedema since breast cancer, it is my right side mostly my hand, having trouble geting a glove to fit, my therapist bandgages and I wear a glove. I hate this disease, mostly because no one seemed to know what it was or what to do. Only through the computer did I finally get infomation which at this time aol is preventing some lists from being sent out. Anyway my index finger which started the infection and caused the swelling was so swollen my therapist recommended an MRI - after the results were read I was told it could be a bone cyst or myeloma (which I don't even know what it is). I am having radiation at this time and my doctor wants me to wait before I have a biopsy. Can anyone help me, I don't know what to do? Hand is getting painful, especially thumb and index finger.

Thank you
Helen, Florida

96. Angela aderge@yahoo.com
West Bend, WI , USA
May 9, 2001 at 19:42

I just wanted to thank everyone whose contributed to this page, its been enlightening and beneficial to my well-being. I was diagnosed with primary lymphedema in my left leg at the age of 16. Being a cheerleader and in my adolescent prime the condition was humiliating and depressing. I couldn't wear all the short skirts anymore or high heeled shoes. Now 5 years later, after going through self-massage treatment, purchasing a pump (which my insurance paid 80% of) drinking tons of water and taking the herbs Rutin and Flaxseed Oil it has reduced some. Also, swimming is a great way to reduce the swelling because the pressure of water acts as a bandage and it pumps fluid out. I agree with everyone that even though its not life threatening it is in some aspects life demeaning. Research needs to be done. Don't give up hope.

95. Steve dblcheeseburger@hotmail.com
Novi , USA
May 9, 2001 at 17:37

Hi, I would greatly appreciate anyones experience or information on swelling in the neck due to damaged or dystroyed lymphnodes following radiation therapy. anything at all would be of great value ---thank you, Steve.

94. claudia potter mizlooneylady@hotmail.com
May 5, 2001 at 09:32

my father had 2 tumors removed from his arm about 2 1/2 yrs ago. Since then it has been one problem after another, he has edema in this arm and lots of skin problems, can anyone help with what to use to clear up his skin, we are at this time wrapping his arm and that keeps the swelling to a minuim but the seepage through his skin is horrible, now he has a rash, drs. treat with antibotics, but don't seem to really work. his skin is so dry that it cracks and squirts blood, and then another trip to the hospital to control the bleeding. drs here aren't much help as they don't deal much with this. any suggestion for soap, lotions or creams would help alot. thank you so much and god bless you all, it was wonderful finding this site, now we don't feel so alone. thanks claudia potter mizlooneylady@hotmail.com

93. Jim Fitzgerald maxplanc@applink.net
Dallas , USA
May 4, 2001 at 03:05

Thank you

I'm trying to help a friend who survived the onset of colon cancer only to have it show up on the liver and NOW on the wall of the abdomenal cavity

I'm convinced it's trans-migrating via the lympth system

He now has had 7 -8 liters of fluid taken from his lower body

I'm looking for "natural" ways to help him.

Treating the symptoms as we go

Very good luck to you

Thank you again

JIM

92. Nell shanm@sympatico.ca
Waterloo , Canada
May 4, 2001 at 01:13

Hi! I have lymphodema in my right foot and like many of you have been told that I am stuck wtih it for the rest of my life. Unlike the rest of you, my problems started with two bites on my foot which caused an infection in the bloodstream. My doctor still does not believe this is possible so is there anyone out there with a similar story? The mites which bit me probably came from 2 dead rabbits in the greenbelt behind our house.

91. Janice goldilox829@alltel.net
Elyria, Ohio , USA
April 27, 2001 at 19:02

Hi, my friend and co-worker suffers from a form of lymphedema where her legs are swollen to twice their normal size. The doctors here have told her there is nothing else they can do.

Through some research, she was told of a school/clinic in Austria run by a Dr. Vodder. Does anyone have any or know of anyone who has any first-hand experience with this school/clinic? She is planning to go but would love to talk with someone who has been there.

Thank you for any information at all.

90. Bonnie Billp@idshouston.com
Houston, Texas , USA
April 21, 2001 at 23:43

It is so wonderful to read all your stories. I hear such courage and a positive attitude in every situation. I had a radical hysterectomy April 2000. I had cervical cancer and the tumor was very close to the matgins so radiation and chemo therapy was ordered. Little did I know that the rediation would fry my groin lymph nodes, and life would never be the same! Cancer was bad enough, but this really sucks!! My legs began swelling last July, they have been really bad since Oct. They got worse after flying back from a well deserved vacation. Both my legs are HUGE, it is quite embarassing. I tried the pump...no help, the stockings...no help and they dig into my ankle and back of the knees. Basically I just try to wrap me legs every night and do MLD through a massage therapist. I would love to hear from anyone with a similar story

89. Margaret Bingamon burlapnlace@hotmail.com
Ontario , U.S.A.
April 13, 2001 at 02:13

Hi- It's nice to see that someone understands the frustration of this stuff. My doctor says that it is lymphedema in my left calf. But I am the one who by surfing the web has been teaching him about treatment for it. He did not even know there was much. What I experience is cellulitus about every five or six weeks. And what looks like lymphengitus about every eight weeks. Is antibodics a normal part of every bodys' life? My leg has gotten so hot with the swelling that I have been able to peel the skin just like sunburn. I am determined to live a normal life if somewhat restricted. My breaking point problem is this; Is everybody else so tired?? I am curently trying vit. B everyday and it is helping some. It is just so frustrating when no one can seem to help. Everybody-keep your chin up. We will make it.

88. Billy billy@hotmail.com
Bedok , Singapore
April 3, 2001 at 06:57

I find that this website is very meaningful and that it ells us a lot about this disease . It also teaches us and make us realise that there are many many other people in this world who need our care and concern. Here we are, enjoying ourselves. We take everthing for gruanted and think that we can have whatever we want. There are so many people out there who need our help. I think that not only people who suffer from this disease need our help, there are many people who suffer from various diseases but, do they want it? Do they have a choice? We should really thank our parents for giving us such a wonderful life. Everyone out there, I hope that you have heard me and start helping people around you.

87. timmy tjmunter@writeme.com
Fridley, Minnesota , USA
March 9, 2001 at 00:26

Hi. Nice site. When I am more down than usual, I often try another permutation searching Lymphedema plus other keywords. I guess I hope to see one with the headline "LYMPHEDEMA CURED!", but, alas, it never happens. Today, however, I stumbled on your site. I am glad to see it because nobody can really understand all the feelings - frustration, hopelessness, anger, "why me?" - unless they have lived with it. Even those close to you, even though usually sympathetic, sometimes demonstrate their lack of understanding and make one feel lazy. It makes it all too easy to simply withdraw from life entirely.

I am 42 and have had Lymphedema in both legs for 8-9 years complicated by chronic skin ulcers and morbid obesity. I have tried compression pumps, ace bandages, elevations, diet changes and on and on. Most all showed some improvement for a while but eventually became far more frustrating than beneficial. I am currently not under any treatment, other than my own cleaning and bandaging of the wounds, because I lost what little faith I had in doctors when I was told that there was little he could do for me and that I made HIM feel bad because of the lack of improvement. I certainly hope doctors will soon start to take this problem more seriously. It may not be "sexy" like heart disease or cancer, but it is very debilitating for those who live with it. It is as physically, emotionally and finacially draining as any other major chronic condition! I dream of the day when science and engineering creates nanobots that crawl through the body and fix everything that is wrong. I can just imagine little critters moving through all the piping, cleaning out the garbage and pushing out the built up fluids. The swelling would go away before my very eyes! Well, like I said, it is a dream.

Thanks for the opportunity to vent a little.

Keep strong everyone!

86. Andrea Diprosa Srtandrea@aol.com
Rochester , USA
March 8, 2001 at 15:34

My mother has primary lympedema. I'm looking for a safe work out for her to do. I f you know of anything that will help her with lympedema, can you send it to me. Thanks.

85. Nikki Minnime_23@hotmail.com
Ingleside , U.S.A
March 6, 2001 at 21:26

hi im 15 and have lympheodema and doing a paper in health class on it, can you help me get more information on this for me? I've read that it's a cancer and a disease but i was never told of this and that i was just born with it pleases help.

thanx nikki

84. Juan josyman@infonegocio.com
Spain
February 22, 2001 at 20:55

Dear Yvonne,
How ever can I explain such a complicated inner experience?
I am sorry that I am not an expert and be able to explain these things properly. But I will try.
I have suffered so much. My childhood years were horrible. Not only had I to cope with the difficulties of having lymphedema on my two feet and legs, there were the laughs, sneers, etc., that children sometimes have to suffer. Worse of all, I had no love from my family. I had no one to cry to with my inner problems, and they always made me feel good for nothing. My teenage years were worse.
Through the years, all these problems made me a shy person with little self esteem and scared to go through life. Later in life, it has not been easy for me. I have no carrer, and I have to work in the little family buissiness due to the difficulty of finding a jobs in my condition.
Through the years I started to accept myself, my life as it was, AND THEN ANOTHER BLOW: I was told that my little baby had been born with my sickness. How I cursed, screemed and wept. Had I not suffered enough?
NOW, maybe this will shock you, but there comes a time when one starts to understand only the beginning point of the mystery of the why. It is very difficult for me to explain the transformation that a person goes through in his suffering.
Personaly I think I went through 7 long stages: the stage of sufffering; the stage of angryness and self pity; the stage of not beleving in HIM; the stage of asking oneself why; the stage of acceptance; the stage of starting to understand; the final stage of happyness.
I think that only when one has truly suffered to his maximum, it is when one is truly liberated. I am speaking of spiritual and of an inner freedom. With this I must say that I have never wished or even now I don't wish suffering for myself. Happyness will come when we become suficiently humble to accept that we are nothing in this grand universe, and that at the same time, we are of great value. Only then, with the help of our Dear Lord, can we ever understand anything. It is very difficult to accept that we are only important inside our littleness. When one gets to understand that our material self is not permanent, that it is only a preparation for our full happyness. When we can understand that nothing happens for nothing, that all has its value, that even our suffering was not worth nothing. That we are important, that our suffering is important in the cycle of life, even if we don´t understand it, only then can we be happy, only then will we be free.
Today I went to the physiotherapist. They are going to give me lymphdrainage 3 days a week soon.
They do not work in the afternoons, so I must go early before work. Today I went to the physiotherapist and I was proud of my lymphedema. I am no longer ashamed or even hide my condition. Lymphedema is me, and I am lymphedema.It forms part of my person, and without it, I wouldn't be me, Juan. People must accept me, the same as I accept them, and I accept myself.
Well Yvonne, I have no more words left for explanations. I hope you can understand something, and sorry for my bad English. Best regards to you, Juan.

83. Patricia Shennar shennar@montana.com
Missoula , USA
February 20, 2001 at 18:08

From: Shennar
Subject: Re: lymph compression system Date: Tuesday, February 20, 2001 10:08 AM

Dear members: I am hoping that you can help me with some information.

My mother has lymphedema in her right arm due to a breast cancer surgery. She was issued a compression pump unit and sleeve for daily treatment. She recently had become very ill and was admitted to the intensive care unit for three weeks. While she was admitted I brought her pump in for she could continue her treatments at bedside. Two weeks had gone by and her pump turned itself off and notified user to call company. I called, but the 800 number was disconnected, and there was no forwarding number or contact.

This is confusing because this was a reputable company and a very expensive pump unit. Please! have you heard anything about this Lymph compression system or who is servicing these machines, or (where could we purchase a new Compression pump)??

Pump Name: ADVANTAGE Model #:1000 Serial #:2244 1.5 amp/115-60H2 Inventory: 004459 When I was searching the internet I came upon your web site. So I am hopeful that you may have heard from others that are looking for help in this situation.

Patricia Shennar Shennar@Montana .com I would be grateful for any information Thank you.

82. Roger Kesterson rkester@citgo.com
Mathis Texas , USA
February 13, 2001 at 23:32

I have had radical prostate cancer surgery, radiation, and then came Lymphedema. My first physican knew nothing about Lymphedema, but he had a young doctor just out of school who knew what to do. When we first started the trunk of my body was swollen as well as my left thigh was seven inches larger than my right thigh. The left calf was four inches larger, also the ankle was three inches larger. We found a good therapist, that her with hard work I have very little swelling at the present time. I have had two flair ups with cellulitis. I am currently wearing 30/40 compression stockings. I am working ever day, and will be glad to share my story with anyone who has problems. By the way I will be 62 in a few days and work at a refinery. God is good any way.

81. Susan Nourachi atlasd@bellsouth.net
Marietta, Georgia , U.S.
February 6, 2001 at 14:33

Hi. My father, age 71, has had severe lymphedema for 10 years since having lymphnodes in the groin area removed. He was treated for lymphoma. I am just here trying to find out if there is any way to improve the condition of his legs. They cause a lot of discomfort and inconvenience.

80. Jr and Chris 4 Prez jrandchris4prez@yahoo.com
Pearland, TX , USA
February 2, 2001 at 20:41

howdy, My friends Jr and Chris, have supported lymphedema for a long time (Chris's mom has it). Anyway, they would just like to show their support for this cause to get rid of lyphedema and to end the suffering. If any of you readers have time, check out their website at http://www.geocities.com/jrandchris4prez/ and show your support for the future leaders of this world (earth). Thank you and have a nice day!

79. Brenda howard1@network-one.com
MS , USA
January 27, 2001 at 06:21

Hi, I've been looking for this site for a long time. I had a mastectomy three years ago with free tram flap reconstruction. I was told nothing about lymphedema or how to prevent it. Fifteen lymph nodes were removed and all were clear. The cancer was caught early so I didn't have to have any other treatment other than the tamoxifen for 5 years. I was really pleased with the plastic surgery and life was grand. Then at the end of the first year my oncologist ordered a mammogram for me including the reconstructed one. Several days after this my hand, arm, and reconstructed breast swelled. I have extreme pain under my arm where the breast was compressed. I believe that I now have lymphedema because of the mammogram. (Right after my surgery they told me not to have sticks or blood pressure taken in the affected arm because it could cause trauma to the tissue. Didn't tell me why or that I could get lymphedema from it.) Well if that causes trauma I would think mashing the heck out of my reconstructed breast causes trauma and could certainly cause lymphedema. My shoulder and back are very painful and the swelling under my arm and side prevents me from wearing a bra sometimes. I would love to hear from others about the very painful and awful disease. May God bless you all.

78. Nicki Johnston nickijohns@yahoo.com USA
January 26, 2001 at 22:46

Hi, I am 38 and have had lymphodema in my left leg since I was 7 years old. I was told it was triggered from a injury or I was born with it. I have been wearing a jobst stocking since then. I also have a compression pump but find it more bothersome than worth while. I would love to chat with others who have this condition. We all need to vent to someone who understands at times. I've experienced the shame, the embarassment, the explainations. Although I still feel angry at times, I like to think that I have overcome it, and moved on. I am a 38 year old woman with 2 beautiful children and they prove to me each day that it hasn't held me back! I am who I am and getting better everyday...

77. Ashley Mckittrick Juliet11833@Aol.com
Whitehall , Ohio
January 25, 2001 at 23:20

I am 12 years old. Iwas diagnosed with lymphedema when i was 10. I had to wear a stalking. But im not treating it anymore.

76. Yvonne Janssen yvonne@weezenhof.nl.eu.org
Nijmegen , Netherlands
January 24, 2001 at 16:44

Today I heard my aunt has died of a breast tumor, that spread to her back and her liver.
25 years ago she was succesfully operated on another breast tumor. As a result of this operation she developed lymphedema in her arm. The arm was thick, but she managed to live with it. It was an active, rather headstrung woman.
A few years ago the wrist of her lymphedema arm began to hurt and she couldn't play the violin anymore. She had an operation on her wrist. The result of this operation was, that her arm began to hurt more and to swell excessively. It became so large, she could only lie in bed. She couldn't do anything. At last her arm had to be amputated. During this operation it was discovered that there was another tumor growing in her breast. With one arm my aunt managed to survive and to make her life interesting and worthwhile, but unfortunately the tumor got her.
I didn't know about this. Because I was operated on breast cancer and have lymphedema myself, I suppose my family didn't tell me anything so I wouldn't be distressed. It came as a shock to me, especially the part, that her lymphedema arm had to be amputated. Everybody knows that cancer is a terrible disease, but let no one tell me anymore that lymphedema is nothing.

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