Lymphedema - For the Newly Diagnosed

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Lymphedema - For the Newly Diagnosed

Postby patoco » Sun May 13, 2007 6:15 am

Lymphedema - For the Newly Diagnosed

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.

Acceptance and Denial

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 tolymphedema.

Education - Being Proactive

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 madly 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

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, the
National Lymphedema Netowrk, 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.

Compliance with Your Treatment Program

Once you have finally gotten that diagnosis, it is equally important
that you get referral to a trained and certified
(LymphedemaAssociation of North America standards) lymphedema

Lymphedema therapist are among our best friends and they actually do
more on a day to day basis to help us then doctors actually do.

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.

Anger, Bitterness and Self pity

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

Don't Stop Living Life

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


Pat ... chive.html

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Postby ksl4139 » Sun May 13, 2007 9:14 pm

Pat, you are so right. I still feel like I am newly diagnosed, Oct. 06, 8 months ago, and I still struggle with accepting it every minute of my waking hours. I am having my first "flare up" since Oct. my leg is swollen and for the first time I have pain in my foot and on the inner aspect of my knee. I can't wear my stockings or compression garment. I have started seeing a therapist, and have started wrapping my leg and going to work. Its so hard because I can hardly fit my foot in my tennis shoe with all the wrap and then my thigh is hugh so only a couple pairs of pants I can wear. I am a nurse so I found a scrub pant but I only have one other that I can wear. Everyone is looking at me limping around because of the pain and the swelling on my thigh. I can't even bend my knee completely so its hard taking care of patients. I have to work because I am single. Soon I hope it goes down and things get back to normal. I think I have cellulitis now too so my M.D. gave me an antibiotic. Sorry this is so long but I just can't believe this has happened!!! I was just fooling myself into thinking I will never have another swell up case of this stuff again but I was wrong. I don't know how this happened too, I always wrap at night and wear my stocking during the day and try to take a walk after being on my feet all day for some exercise. I just hate it.
Thanks for listening.
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increasing edema

Postby suzeeq » Sun May 13, 2007 11:38 pm

Hey Kathy, I just wanted to say hi - I'm a nurse too with lymphedema of my left leg and buttock. However all of us here on this site can sympathize and empathize with your situation. Sometimes you do all of the right things and still, the edema increases. I work on a orthopedic floor, 12 hour shifts. For the past month or so I was working with bandages on. I had to buy large scrubs to fit my one leg. The only way that I could get shoes on was to leave off some of the wrapping on my foot. I left off the artiflex, but used the foam pad over the top of my foot, then wrapped with the short stretch bandage. I only could lace up a couple of holes, but at least I got them on. With bandages, you do tend to limp, so now everybody knows what is wrong with me. Even patients were asking me. But that's ok because it gave me an excellent opportunity to educate others about LE. I am 52 and it will be 5 years in Sept. that my symptoms started. I am now back working with my compression hose on ( have new hose now), and it is much easier to work. You are not alone. Hang in there. Susan
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