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For the Newly Diagnosed
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FOR
THE NEWLY DIAGNOSED
Written by Patrick O’Connor
Used by permission
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 to lymphedema.
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 be 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 has become a buzzword in the cyber-world and
there are 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 endanger 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, the National 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.
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 lymphedema therapist. Lymphedema therapists 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 prescribed treatment
program.
We
all understand the fatigue, the pain and the depression that can come with
lymphedema. But, my friend, the truth is
that it is up to you to work with your therapist as a team to insure 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, to feeling
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 your recreational
pursuits. But it doesn't mean 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 cannot do anymore, find
another to replace it with. It is
impossible for me to spend all day (lol..even a couple of 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 devastating 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.
Pat is the ‘Papa-Bear', Founder, and Executive Administrator of Lymphedema People. His education includes degrees in History, Political Science and Social Science, with graduate studies in philosophy and religion. Professional designations include Certification in Customer Service Management, Advanced Certification Patient Account Representative, formerly licensed in Life and Health Insurance (Oregon). Pat is a beautiful person, a father, a grandfather, and an inspiration to many. Go to http://www.lymphedemapeople.com/ to read more from Pat.