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The immediate time period after being diagnosed with lymphedema can be a confusing and frightening time. In one sense, there may be relief…finally there is a name to this awful “thing” that has attacked your body. But there is also a bewildering amount of emotions, fear…questions of what do I do now and where do I turn to begin dealing with this condition.
I wanted to share a few ideas that hopefully can make this period a little smoother and help give a bit of direction.
You may go through a time when you try to say to yourself that this swelling will just go away by itself or that you don't really have to do anything about it and that it may not matter much anyway.
But as hard as this is to say, the reality is that if you have lymphedema, it just isn't going to go away by itself. It isn't a medical condition that you can just ignore and hope for the best. While there is no present cure, there is treatment available that can help manage it and help you get back on track with your life.
It is so very important to understand this and to get into a treatment program as soon as you can.
Point to Ponder: Acceptance doesn't mean surrender or giving up to lymphedema.
As you may have already experienced, there is a great deal of ignorance in the medical profession about lymphedema. Sometimes, it takes years for a diagnosis and after even that is achieved, most doctors really don't know what to do next.
That is why it is critical that we as lymphedema patients take the initiative and proactively educate ourselves on every aspect on the condition. You will want to find out what lymphedema is, what it does, what to expect from it, how to have the correct treatment and perhaps most important, how to have a full and meaningful life even with it.
You will also want to educate yourself so you will not fooled by or damaged by all the very bad misinformation out there regarding lymphedema and the lymph system. I've noticed that in the last couple years, the lymph system bas become a buzzword in the cyberworld and there a all too many uneducated and badly informed people trying to sell pills, potions and promises of quick cures. Unfortunately, often these supposed cures cause more damage and can even dangerous to your life.
The good thing is that there are many excellent websites that you can go to and find solid, credible, life giving information. In addition to Lymphedema People, there is The Lymphatic Research Foundation, theNational Lymphedema Network, Circle of Hope Lymphedema Foundation, Lymphovenous Canada, Lymphoedema Association of Australia and UKLymph to mention only a few.
Point to ponder: Knowledge is Empowerment. Remember the life you save, may be your own.
But, sadly as so many therapist will tell you, the number one reason their patients don't get better or even experience a worsening of their lymphedema is the failure of the patient to be compliant with the proscribed treatment program.
We all understand the fatigue, the pain and the depression that can come with lymphedema. But, my friend, the truth is, is that it is up to you to work with your therapist - as a team to insured you get the most out of your treatment.
Point to ponder: It is your life and your responsibility to do all that you can to help yourself.
After that diagnosis you will go through a period of intense emotional conflict. You may swing from anger, feel bitter that this has happened to you and start feeling sorry for yourself.
Please understand, this is totally normal and yes, you do have a right to experience those feelings. Actually, if you didn't, I would really be concerned for you.
But the key is not to stop with either of those emotions. They are to me, the triple malignancies of the spirit. They have destroyed more lives throughout history then all the medical conditions combined.
Work your way through them…keep pressing forward knowing that this terrible time of emotional struggle ends.
The following is something I do each morning and it really has made a difference in my life.
Point to Ponder: Every morning, before you start your day, ask God to help you be a source of joy, hope and encouragement to another person
When you are first diagnosed, it is easy to be overwhelmed. You feel like your whole life is over with and you will never be able to do anything you love doing again.
Please, believe me when I say, that is simply not true. Lymphedema isn't about giving up and quitting life, it is about adaptation. You may need to change how you do things, figure out new and less strenuous ways of working and in recreation. But it doesn't eman to have to stop everything you are used to enjoying.
Besides, if that were true, why even be alive??
If you do find there may be one particular activity you can not do anymore, find another to replace it with.
It is impossible for me to spend all day (lol..even a couple hours) working in my garden. But, I am able to sit at a computer and reach out to help others with lymphedema.
There just are too many wonderful activities, hobbies and interests to pursue to crawl into a cave and hide.
Point to Ponder: If one dream is taken away, God will send another, even more special to replace it.
In conclusion, yes, it can be devestating to be diagnosed with and stricken by lymphedema. But, I honestly do believe, it ultimately comes down to how we choose to handle it. Do we choose to surrender or do we choose to have a meaningful and joyous life despite lymphedema.
LIFE IS A CELEBRATION OF THAT WHICH WE CAN DO, NOT A REQUIEM FOR THAT WE CAN NOT DO.
In our forums section, you will find over 3,000 posts with hundreds of additional articles encompassing every aspect of lymphedema you can imagine. Information, questions and answers that will enable you to discover not only how to live with lymphedema, but to manage it, overcome it and lead a life that is rich, meaningful and rewarding.
Visitors can read the forums, but only members can post and answer questions. Come and be a part of the largest lymphedema online network in the world.
Here is a list of the forums:
Membership Rules in New Forums
Lymphedema People Administrative, Management
Registry of Lymphedema Doctors
Lighthouse Lymphedema Network Lymphedema Education & Awareness Program
Daily Lives with Lymphedema
Children and Lymphedema
Young People with Lymphedema
Related Medical Conditions (often associated with lymphedema)
Complications of Lymphedema
Treatment Information for Lymphedema
Therapists, Clinics and Hospitals
Skin care, conditions and complications
Lymphedema and Cancer
Advocacy and Governmental Resources
Genetics, Research, Lymphangiogenesis, Angiogenesis
Organizations, Support Groups, Vendors
Join us as we work for lymphedema patients everywehere:
Advocates for Lymphedema
Dedicated to be an advocacy group for lymphedema patients. Working towards education, legal reform, changing insurance practices, promoting research, reaching for a cure.
Lymphedema People / Advocates for Lymphedema
Children with Lymphedema
The time has come for families, parents, caregivers to have a support group of their own. Support group for parents, families and caregivers of chilren with lymphedema. Sharing information on coping, diagnosis, treatment and prognosis. Sponsored by Lymphedema People.
Lipedema Lipodema Lipoedema
No matter how you spell it, this is another very little understood and totally frustrating conditions out there. This will be a support group for those suffering with lipedema/lipodema. A place for information, sharing experiences, exploring treatment options and coping.
Come join, be a part of the family!
MEN WITH LYMPHEDEMA
If you are a man with lymphedema; a man with a loved one with lymphedema who you are trying to help and understand come join us and discover what it is to be the master instead of the sufferer of lymphedema.
All About Lymphangiectasia
Support group for parents, patients, children who suffer from all forms of lymphangiectasia. This condition is caused by dilation of the lymphatics. It can affect the intestinal tract, lungs and other critical body areas.
Lymphatic Disorders Support Group @ Yahoo Groups
While we have a number of support groups for lymphedema… there is nothing out there for other lymphatic disorders. Because we have one of the most comprehensive information sites on all lymphatic disorders, I thought perhaps, it is time that one be offered.
Information and support for rare and unusual disorders affecting the lymph system. Includes lymphangiomas, lymphatic malformations, telangiectasia, hennekam's syndrome, distichiasis, Figueroa syndrome, ptosis syndrome, plus many more. Extensive database of information available through sister site Lymphedema People.
Teens with Lymphedema
All About Lymphoedema - Australia
All About Lymphedema
For our Google fans, we have just created this online support group in Google Groups:
Group email: All-About-Lymphedema@googlegroups.com
Edited Jan. 18 2012