Guestbook Number 18

Numbers 426 - 450

October 27, 2004 - November 29, 2004

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450. Angela Sievert aderge@yahoo.com
West Bend , USA
November 29, 2004 at 19:46

Hi CW,

I am 25 and was diagnosed when I was 16 with left leg primary lymphedema. I have tried the reid sleeve and it does work well; however it is rather bulky and hard to sleep in. (Yes-worse than the bandages!) Another problem is while you are wearing it you can't do your manual lymph drainage massaging that you do while you pump, since you are sleeping. If you don't have the money to purchase one or your insurance won't pay for it, they are quite easy to sew. You take foam and cut it into chunks. Then you sew like a sleeping bag for your leg with a flap for your butt. Instead of filling the "sleeping bag" with insulation, you fill it with the foam chunks. Then you sew chambers horizontally around the leg, so there are about 8 different sections of foam chunks going up the leg. The reid sleeve works best perhaps under a pump sleeve (to break up the lymph hardness) or under bandages. Thought this might help. Angela

449. CW wilsoca@hotmail.com
Kitchener , Canada
November 26, 2004 at 01:17

Hi, It is great to read so much about lymphemea. I was diagnosed at 20 years of age and have primary lymphedema in my left leg. I am now 35 years old. I have diligently used a sequential pump and stocking. Luckily I have not had infections or problems. I'm wondering if anyone has a reid sleeve and what they think of it. I was wondering if it would help to sleep at night with it instead of using the pump in the evening? Good luck to everyone and take care. Thanks, CW

448. Pat O'Connor lymphedemapeople@aol.com
Atlanta, GA. , USA
November 22, 2004 at 04:30

Hi Maria

Welcome to the Guestbook.

Very much appreciate your post, especially on diets. It is so important to have a healthy diet, to eat foods that help our bodies heal and cope with lymphedema. Sounds like you are doing to much to help yourself.

The sequential pump is the preferred pump in therapy as long as it accompanies the MLD and the use of compression garments.

Leather shoes are good for a couple reasons. They breathe, which means they allow air to get to our feet to help prevent foot fungus infections and complications and because of their "firmness" they can actually help hold the swelling down in the feet.

Be encouraged, that emotional roller coaster is something we all deal with, even after 51 years of lymphedema I have it all the time. It is so easy to get discouraged with this condition...it seems to always find new ways to "hassle" us. I always think of the discouragement and depression cycle as storms.... just ride them out and they eventually pass... in the meantime just move forward.

Best to Ya - Pat O'Connor - Lymphedema People - http;//lymphedema.omno.org

447. Maria Neal tallbuddy@gmail.com
Ellicott City , MD
November 20, 2004 at 22:40

Hello, this is my first contact with a Lymphedema group. I am 38 years old and I have had lymphedema for over 8 years in my lower left leg. It started when I was pregnant with my second child during the 5th month. The edema during the last 7 years was minimal compared to now. While in England last year I developed cellulitis in the lower leg and now I have lymphedema in my entire leg. I am almost 6 feet tall and am not overweight. Early in the year, I went for MLD therapy. This helped but I felt like a mummy all the time. I tried wrapping at night for many months but grew tired of having my leg constricted. I am in search of different ways to control my lymphedema and am interested in hearing how others deal with this condition. Currently, I take Bromelain for inflamation in the morning on an empty stomach and I take fish oil supplements. I don't drink tea or coffee but I do eat small amounts of chocolate. Mostly I prefer freshly squeezed lemon in hot water with honey. What I eat helps reduce swelling but it cannot eliminate it. I try to eat a high fiber, low fat diet. Beside having lymphedeam, I am a very healthy person. To manage my lymphedema, I reluctantly wear my compression stocking and I use a sequential pump. The pump appears to help reduce the hardness in my leg. I'm curious to hear who's using a pump and if it has helped.

I feel like I am on an emotional rollercoaster dealing with this condition. The best time of the day for me is when I first wake-up because the swelling is minimal. As you all know, as the day continues so does the swelling. I feel for all of you dealing with this condition. I hate having to deal with it. My goal is to one day wear a skirt or shorts again. I don't know if that is possible or not. I do know that going to the beach is no longer a pleasure. I was very depressed this past summer while vacationing with my family. My leg just continued to swell when it was not compressed. Most of the time on the beach I wore men's light weight sleeping pants and water shoes to protect my feet. Does anyone know whether wearing a wet-suit would help with the edema? Also, has anyone noticed when when you wear leather shoes, the edema in your foot is minimal. It seems to me that when I keep my leg very warm, it helps the edema. I am going to try using the Under Armour long johns to see if it helps.

Wishing you the best!

446. Pat O'Connor lymphedemapeople@aol.com
Atlanta, GA , USA
November 19, 2004 at 18:44

Hi Doreen

You may want to scroll up the page and read FAQS on the Treatment of Lymphoedema, really excellent article written a therapist Cyndi Ortiz from Nevada, USA. There is no cure, but you will find top notch info on what it is and how it can be treated.

It almost sounds like your family may carry a genetic tendancy for lymphedema and the accidents and injuries have "triggered" it. Much research is going on in this area and in fact one of the lymphedema genes - FOXC2 - is also being implicated in being a causative factor in Diabetes II.

By the way, it can be helped by proper exercise and diet. Take a look at the FAQS page...if you have any further questions, please do post them... we are all here to help in any way we can.

Silkie.....welcome and thanks so much for reaching out to Neda... your a gem!!!!

Big Hugssss - Pat O'Connor - Lymphedema People - lymphedema.omno.org

445. silkie dottydotty282@hotmail.com
manchester , england
November 19, 2004 at 18:23

Yvonne wonderful site, thanks Pat for showing me the way. ok little about me. I'm 54, have primary lymphedema, do the bandaging the MLD, I have an amazing practitioner , I'm so lucky now. I have had this from pubity, was diagnosed finally about 14 months ago, with stage 3 chronic odema (elephantitus), had full on treatment everyday for a few weeks, lost eight inches of each ankle. I find the neglecy of lymphedema and their ignorance very hard to take. Well I don't, that is why I started the support group because I felt there are thousands of people that don't even know they have it. Poor people are probably trying to diet and failing and feeling so bad about it because no one believes you. Things are changing slowly thanks to people like Pat and Yvonne and support groups round the world, So hang in there the times they are a changing. Any one wanting to chat, or talk please, I am on line so much, my msn is there or email me more often than not I can get back to you fast, and I'm in the chat room every night. Come see me anytime. LetsTalkLymphedemapatiensGroup,
hugggggggggggggg silkie

444. silkie dottydotty282@hotmail.com
manchester , england
November 19, 2004 at 18:12

Hi everyone, Im Dotty --- Silkie to my friends. I have primary lymphedema. Neda, I would like to talk to you so much. Before I was diagnosed, I had to wear plastic bags on my feet because nothin would cover them. My legs hung on the floor and lymph fluid oozed out of them. I know that feeling your feeling hun and you can beat it. It's not easy, but it so worth the effort. My email is here. Another thing I would say id I know Pat has an anazing man. If he can help he will. If there is any information that can be found, he will find it. And he's a STAR, the best friend to so many people. This site is a mine of information, but more than that, it's full of people that become real helpful and caring friends.I have a site too, which is there for anyone to come see, and we have a chat room open at the moment 8pm to 11pm (English time) 7 nights a week. Pat is there helping me too. Please feel free to come see us anytime. Neda please get in touch, LetsTalkLymphedemapatientsGroup

Thanks for the link Pat
hugsssss silkie

443. Doreen McAlpine gdmac@jwc.net.au
Brisbane, Australia
November 19, 2004 at 08:50

I have just read through the guest list and found it very interesting. Firstly I am 68 years of age and are overweight, have tried every diet going to no avail. Now I have been diagnosed with Diabetes type 2, gout, have asthma under control, proned to chest infections, been in a car accident and have one impaired arm and leg, need to use a walking stick. I was talking to a man 3 days ago and he said he reckons I have Lymphedema. Because of the accident I have trouble standing and excersizing as I have steel in my right leg and my left knee is bascially stuffed. My question is what is Lymphedema and can it be cured or helped with diet and excersise. I also have a sister, who suffers a lot with celulitis and Lymphedema from being in a different accident that cut her legs so badly. I would appreciate any info that I could read or pass on to my sister that would help us both. Sincerely Yours Doreen E McAlpine.

442. Pat O'Connor lymphedemapeople@aol.com
Atlanta, GA , USA
November 18, 2004 at 14:22

Hi D

You would be amazed at the problems and infections that can come with bad teeth. If you are having dental problems like you mentioned, most definately I would say the lymphandopathy (swollen nodes) are being caused by that. You may have an infection. You may want to ask your doctor about antibiotic therapy, then once the infection is gone and the swollen nodes are normal, you have to get those teeth taken care. Dental infections can have catastrophic results for your entire system. Best to You, Pat O'Connor - Lymphedema People - http://lymphedema.omno.org

441. D therightdirection_82@yahoo.com
Charlotte , USA
November 18, 2004 at 05:15

Hello, I have a question concerning swollen lymph glands/nodes. I don't have insurance so can't afford to go to the doctor to check it out but hopefully soon I will be able to. But they are swollen in my groin area, armpit area, neck area, under the neck, back of the neck. I am pretty certain that I don't have HIV, but I do have unhealthy teeth, have had abscesses,cracked teeth, cavities all over. Could that be the problem?

440. Pat O'Connor lymhpedemapeople@aol.com
Atlanta, GA , USA
November 17, 2004 at 15:57

Hi Neda

Very glad you posted and shared, I so appreciate your honesty and openess,

Wanted to let you know my background first. I have had lymphedema for all my 51 years. I had been stared at, laughed at, made fun of, called a freak and much more....my left leg looks much worse than Frankensteins face and my right leg looks like worse than a nightmare. I have also had to deal with two lymphomas - seems apparent they are not in remission, no treatment available and much much more. So I totally understand and can identify with all your pain and suffering, we are sojourners down the same road.

But my dear Neda, consider the following and I say this will all due respect and compassion.

I do believe that we can still have a fullfilling, happy and very meaningful life - irregardless of lymphedema. But that happiness must come from within and that fullfillment must be a choice that only we can make for ourselves. We can choose to throw in the towel and give up making ourselves the victim of lymphedema - or we can choose to be the victor over lymphedema.

If all it took was a body beautiful to make one happy - then why do we see so many people - healthy and beautiful (physically) - some with lots of money etc etc committing suicide, drugging themselves into oblivion, leading lives they hate and loath?

It is because we are more than just a body. Who and what we are inside is so much more important to me than anything else. If we can't look at ourselves in the mirror and like and respect the person we see, than the rest is irrelevant. We are our inner value system, how we treat others, how we bring hope to others lives, the joy we give to others. We are our creativity, our art, our music, our writings, the beauty we bring into the world. We are our inner soul and the compassion and depth that can flow from within it.

Yes, my legs may look like a freak show. But I would rather be me, with my legs - than have a beautifully perfect body and an empty inner shell. Look within and ask yourself - who I am on the inside, what do I stand for, what are my values. If you can not accept yourself - how in the world can you expect others to accept you; if you don't like who you are, will others?

Sometimes, life does suck, it is hell and can be totally brutal. We may not be able to change what life deals us.... but we can chose how we respond. Dear Neda, choose life.... choose to be the victor over lymphedema (not the victim)... choose to make your life a blessing to others...choose to joy that is waiting for you.

I'm sorry if this sounds preachy - wasn't meant to be....just some things I feel in my heart. I want the very best for you - and want to see you become who you can be.

Love and Big huggss

Pat - Lymphedema People - http://lymphedema.omno.org

439. Kyle barman_drinks@hotmail.com
Cape Town , South Africa
November 17, 2004 at 06:13

Hello

I am so pleased that I found this site, I never knew there are many people in the world who share my problem. In 2000, age 11, I was told I had lymphedema from the knee down. This seems weird to most people when I explain it to them. Its a pain when people tease you about it. Put to me its every day life, I get up and put my compression stockings on and go to school. Thanx to the people for this great site!!!

438. Neda mcwillim@hoffman.army.mil
Alexandria, VA , US
November 16, 2004 at 19:48

I don't believe that there is another out there like me. I have chronic lymphoedema in both legs and upper left thigh. I am overweight and with my deformed legs - a walking freak show. A celebrity would pay for the amount of attention that I get on a daily basis. My left ankle swells so big that I cannot find a boot for winter. I have to wear regular shoes and hope they are wide enough to accomodate swelling. I cannot find pants to fit properly. Hard to find wide leg pants in large sizes. I absolutely will not wear a dress or skirt, ever. I'm 42 years old. I have alienated friends. Social life consists of talking on the telephone. I do work and I go to church. Miserable. I know that there are worse things to have. But nobody wants twisted up, meat hanging over shoe legs except those who have no legs at all. This life is hell.

437. Pat O'Connor lymphedemapeople@aol.com
Atlanta, GA , USA
November 11, 2004 at 14:46

Hi Gail

There problem with magnetic therapy is in the pathophysiology of lymphedema. This condition is cause by a malformed, damaged and/or impaired lymphtic system. Magnetic therapy does nothing to cure or resolve these issues. Also, there are no clinical studies that affirm the effectiveness of magnotherapy with lymphedema. Here is an article you may want to read: LYMPHEDEMA AND MAGNETIC THERAPY - http://lymphedema.omno.org/thesite/lymphedema_and_magnetic_therapy.htm - Best Regards, Pat O'Connor - Lymphedema People - http://lymphedema.omno.org

436. Gail Fallis fallis@consolidated.net
Diboll, Tx , USA
November 11, 2004 at 07:42

Hasn't anyone heard of using specially designed magnets to increase the blood flow anywhere on the body one needs it? I've only recently heard about Lymphoedema because my brother-in-law has it and I started researching to learn about it. It sounds like a lack of circulation and can be anywhere on the body. I've been using these specially designed magnets for years and I don't even have this disease. I do have poor blood flow to my legs and feet, unless I wear these magnet insoles. I do believe the word needs to get around. I'm not a crazed individual. I know of what I write. My brother-in-law is wearing these insoles as he has swelling of one leg and foot. With the increase in blood flow, the swelling goes down naturally. It would certainly be worth an investment of $69. to see for yourself. No, I'm not crazy. Gail Fallis

435. Pat O'Connor lymphedemapeople@aol.com
Atlanta , USA
November 10, 2004 at 15:33

Hi Barb

Appreciate everyone's kind words...it's a joy to help. There is now cutting edge research reports coming out that is clearly showing the FOXC2 gene (one of two known lymphedema genes) also is a responsible factor in diabetes, chronic venous insufficiency and that has a major part in counteracting obesity and hypertriglyceridemia. I suspect the upcoming research may help solve the question of what causes lipodema. Clearly doctors need to update their knowledge in this entire realm. If anyone needs these articles to show their doctors let me know and I'll be glad to post them. My very best to everyone. Pat - Lymphedema People - http://lymphedema.omno.org

434. Barb yogachik05@yahoo.com
Indianapolis , USA
November 9, 2004 at 18:14

Linda and Ann,

I too have suffered from Lipedema since puberty. I actually diagnosed myself a couple of years ago from reading and searching the net, and I gave the info to my doctor. Like you, I was always told either, "You just need to lose weight" or "Lymphedema". Doctors are basically clueless. I don't understand why we are so far behind Germany, UK and Australia in the research of this disease. Even the specialists are behind the others. I'm going to be doing a research paper on Lipedema, so if anyone knows of others with this condition, I'd love to discuss it with them. I really did think I was the only one who had this......

Thank you Lymphedema People!!!!

433. Marie henry1t@gte.net
East Coast , U.S.
November 7, 2004 at 03:07

Does anyone else think it would be very cool for us to have our own gelly bracelet like the cancer and breast cancer groups? I think it'd be cool to have to show support and unity and send money to research...but that's just me.

432. Leni
NYC , USA
November 6, 2004 at 04:07

Hi,Pat.

Thanks for being so wonderful and for your response. My mom thanks you also and sends you a big cyber-hug right back. We're definetly looking into Sloan Kettering. No, we didn't know about it, so thanks. Lymphedema People has been very informative also. Anyway, just know that you've been a great help and all the best to you from the bottom of our hearts.

431. Kitiboni (Kiti) Rolle kitiboni_pt@hotmail.com
New Providence , Bahamas
October 31, 2004 at 16:52

Hello, I am a physical therapist, recently graduated from the Academy of Lymphedema Studies and I am very excited about my new skill. I reside in The Bahamas, Nassau (New Providence), and I am looking forward to treating Bahamians and any "Snow Birds" who are dealing with lymphedema. I can be contacted at (242)427-5820 or (242)364-3430.

Yours Thankfully Kitiboni I. Rolle, Registered Physical Therapist, Certified Lymphedema Therapist

430. Pat O'Connor lymphedemapeople@aol.com
Atlanta, GA , USA
October 29, 2004 at 04:10

Hi Marie

Just wanted to say a word of encouragement. I truely understand how you feel. Though I am ancient (51 yrs old), I was born with Milroy's, grew up with it and faced all the frustrations, complications and emotions you deal with.

If I can every be of help, answer questions or just allow you to vent, do feel free to contact me.

Pat O'Connor Lymphedema People http://lymphedema.omno.org

429. Pat O'Connor lymphedemapeople@aol.com
Atlanta, GA , USA
October 29, 2004 at 04:05

Hi Leni

Just about everyone of us with lymphedema has experienced these "wounds" with lymphorrhea. Here is a page you may want to check out with some info on how to deal with this problem.

http://lymphedema.omno.org/thesite/lymphedema_wound_care_revised.htm

and a page on lymphorrhea

http://lymphedema.omno.org/thesite/lymphedema_lymphorrhea.htm

I know what your mean about Dr. Lerner... can't say enough good about him and just what a blessing he was to us with lymphedema...but have you checked out Sloan Kettering? I have also heard great things about their lymphedema treatment center. You may want to give them a call.

Let me know if there is any way I can help - and give your mom a special hug.

Pat O'Connor - Lymphedema People - http://lymphedema.omno.org

428. Marie henry2t@gte.net
East Coast , U.S.
October 28, 2004 at 05:52

Hey Everyone, I've recently "celebrated" the 5th aniversary of my official diagnosis of Milroy's Disease. I'm now 19 years old and have very recently been wanting more contact w/ people that are in a similar situation. I'm not depressed or in need of a support group per say, I'm just tired of not being able to talk to anyone about my condition without taking forever to explain it first. I am finding it very frustrating to find such a connection, however, since everyone i've seen who has this same problem is twice my age. If there is anyone out there who is in the same boat and would like to contact another person who understands please feel free to contact me.

426. leni
nyc , usa
October 27, 2004 at 02:16

Hi, everyone. Thank God for this website. I've learned more here than from any doctor. My mother has had secondary lymphedema for about 12 years in her right leg. She had a radical hysterectomy because of cervical cancer. The cancer was cured but she got lymphedema as a result. It has been hard to say the least. Over the years, she has been hospitalized 12 times for cellulitis. And it is amazing how little doctors know of this condition. She used to go to the Lerner Clinic in NYC, but he has since retired and there is no other place like it in NY. Lerner's therapy helped tremendously. But she has yet to find therapists in the nyc vicinity. She now has developed a leaking of lymph from papillomas in her genital area. She is seeing a gynecologist oncologist but he doesn't say what to do for this condition. Has anyone suffered from lymphorrhea. Will it ever stop? Right now she bandages her leg and keeps it elevated as much as she can. Her quality of life really sucks. Can anyone help?

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