Emotional
Effects
Lymphedema can affect your self-image, interfere with your
routine activities and what clothes you can
wear, and remind you of
the disease you thought you'd overcome. Your arm may feel heavy as lead, an
appendage that is somehow "you" but "not you."
Your arms and legs
may also ache, feel tired or uncomfortable, or feel tight or painful. It may
look swollen
and unattractive. Strangers may ask you why your arm
or hand is swollen, or why you're wearing a
compression sleeve or
bandages. Adding insult to injury is the continuous medical care and expense of
treating this unpleasant condition.
Most cases of lymphedema
aren't disabling or terribly uncomfortable. But once you do have an episode,
the
condition tends to persist or recur, varying in degree. The
lymphedema may go away on its own, or it may
clear up only if the
cause is treatable (and treated quickly).
Episodes may last for days or
weeks. If your swelling lasts for months, it's likely to be permanent, but
remember that even the most severe cases can be substantially improved
with ongoing treatment. Severe
cases of lymphedema can cause
thickening of the skin, stiffness and hardness of the arm and hand, and
leakage of fluid from minor injuries. Fortunately, such severe cases
are unusual.
People have different emotional responses to developing
lymphedema, and all of them are perfectly normal.
You might be
angry that you weren't adequately warned about the possibility of developing
lymphedema.
Even if you were warned, you might still feel angry because
lymphedema is a chronic condition that you will
need to manage in
some way for the rest of your life. It's common to be frustrated with
treatment, since it
can require a large commitment of time, effort,
and money. Other emotional responses include depression
and
feelings of helplessness.
Whatever your feelings about lymphedema, it's
important to talk about them with friends, family, and health
professionals. It can help to know that you have choices about how to
manage your lymphedema. An
occupational or physical therapist can
explain your treatment options and help you decide which is best for
you.
It takes a lot of patience, and trial and error. Not every treatment option
works for every
person.
----------------------------------------------------
Your
feelings about lymphoedema
Having lymphoedema may bring about a
variety of feelings, which arise not only from the discomfort of the
condition
itself, but also from the cancer and its treatment, which caused the
lymphoedema to develop.
Embarassment
The lymphoedema swelling
may be a constant reminder to you that you have had treatment for cancer -
something you perhaps had hoped to forget as much as possible. If the
swelling is severe, you may feel
embarrassed and self-conscious
about it.
Try not to shut yourself away. Almost certainly, the swelling is more noticeable to you than it is to others. If
you are nervous
about going out in public at first, ask someone you know to come with you. You
will
probably find that no one makes an issue of your
lymphoedema.
If you have very obvious swelling, some people will
inevitably be curious, especially children. Many people
find it
helpful to rehearse what they will say in such situations. Your lymphoedema
therapist or nurse may be
able to help you plan and practise your
responses. Or you may prefer to talk about it with other people who
have lymphoedema.
You could decide how much you wish to say
about your condition, whether to refer to your cancer or
treatment.
Once you have a prepared response, you are less likely to be thrown by any
remark or question
directed to you. You may even find yourself
actively helping others to overcome any awkwardness they may
feel.
As your lymphoedema becomes more under control, and as you
get more used to it, you will almost
certainly find that your feelings of embarrassment lessen. You will probably realise that true friends care for
you because of the person you are, not for your
appearance, and this will increase your self-confidence and
make
you feel more in control of your life.
Anger
You may be
feeling very angry that you have to deal with the burden and inconvenience of
lymphoedema.
You may have been expecting to be feeling well again
and leading a normal life.
If your lymphoedema began shortly after your
cancer treatment, it may seem like the last straw, on top of all
the physical and emotional upheaval caused by having cancer. It is
quite natural for you to feel angry about
it; you may find the
anger becomes less as you become accustomed to the daily treatment routine and
the
swelling begins to respond to the
treatment.
Resentment
Having lymphoedema requires extra
effort in taking care of yourself. Following your treatment routine can
take up a lot of time. You may feel resentful about this, especially if
others seem free to get on with their
daily lives.
Try not
to bottle up your feelings but talk to the people close to you about how you
feel. Between you, you
may come up with ways in which they can
help. For example, someone could learn to carry out the
lymphatic
massage for you, give you lifts to your treatment centre or perhaps help with
the shopping, so that
you do not have to carry heavy
loads.
Once you have become used to the routine of treating your
lymphoedema and following the guidelines for
controlling it, you
will probably find it less of a burden and feel more able to enjoy your normal
activities.
Some people find the swelling eases within a short
time, while for others it can take many months, but don't
give up -
there is nearly always some improvement with
treatment.
Depression
Lymphoedema is an ongoing problem
and at times you are likely to feel low or depressed about your
situation. You may find it helpful to talk to other people who are
living with lymphoedema, and the nurses at
Cancerbackup can give
you information about support groups in your area. Your doctor may be able to
refer you for help.
Lymphoedema may affect the way you feel
about yourself, which may have a negative impact on your
relationships with other people. People often need to feel happy with
their bodies in order to have a fulfilling
sex life.
Fear
that a partner - even a long-standing one - may be put off by the lymphoedema
can make some people
scared of physical relationships. The
lymphoedema may also make it physically difficult to have sex.
Often,
talking about how you are feeling can help to relieve any worries you have
about how you look.
Some people are able to talk with their partner,
others prefer to discuss things with a counsellor or sexual
therapist. Your doctor or nurse can make a referral to a therapist for
you if this would be helpful.
http://www.cancerbackup.org.uk/Resourcessupport/Symptomssideeffects/Lymphoedema/Yourfeelings
----------------------------------------------------------
Medically
speaking – anything but normal
By Jennifer L. Boen
[email protected]
Heather Sosenheimer picked up what
looked like a photo album. But the pages contained no pictures of her
three
little boys, who were playing in the backyard, or of her teenage daughter, not
yet home from school.
In the see-through pockets were business cards, dozens
of them. Rarely a week goes by when Heather and
Rick Sosenheimer do
not use the book to call a pediatric neurosurgeon, ophthalmologist or another
of the
many medical specialists their sons
require.
Conditions
The unraveling of the family’s medical problems began
in September 2005 with now-7-year-old Kedrick’s
diagnosis of
pseudotumor cerebri (see graphic below). His parents finally had an explanation
for his intense
screaming. “I kept saying, ‘Something isn’t right.
He’d get this scream and wouldn’t quit screaming,”
Heather
Sosenheimer recalled. In a spinal tap, Kedrick’s cerebrospinal pressure was 23;
normal is 5-15 in a
child. His fluid pressure fluctuates, sometimes
too high, sometimes too low. Either way, he is in pain. “He
can
only be up for about two hours before he has to lie down,” Heather Sosenheimer
said.
To an onlooker, all seems well with her son. It’s a mixed blessing.
“People don’t understand why Kedrick
can suddenly start screaming.
They can’t see that he has a very, very bad headache that won’t go away.
They’re thinking, ‘Can’t you get control of him?’ ” Heather Sosenheimer
said.
Within six months of Kedrick’s diagnosis, the family learned all three
boys have rare brain conditions that
include chiari malformation,
pseudotumor (see graphic) or cysts. The pressure around the brain of Hunter, 6,
was 55. Damage to the optic nerve, especially in his left eye, had
already occurred.
Drake Sosenheimer, 8, has three cysts in his brain and
chiari malformation, although, unlike his brothers, his
chiari has
not required surgery.
The family thought Hunter’s shunt, his third, was
working OK until a few weeks ago. An eye specialist at
Riley
Hospital for Children in Indianapolis said Hunter’s vision is rapidly getting
worse. When Heather
Sosenheimer heard the news, guilt swept over
her: “I have been so concerned with Kedrick that I have been
ignoring Hunter.
“But life is what you make it,” she said. “It’s not
stopping just because they have these problems. You can
cry
yourself underneath the table. It isn’t going to make things any
different.”
Daily life
The house comes alive when the school day ends.
Seconds after getting off the school bus, the front door
flies open
and the boys head to the cupboard for a snack of peanut butter crackers. On the
kitchen wall is a
plaque that reads: “There will be no crisis today. My schedule is full!” It is wishful thinking for their mother.
The
boys attend Haley Elementary School and have chores around the house, including
helping take care of
the new puppy, Shannee; picking up toys; and
doing homework.
“Do we have Scouts tonight?” Drake asked his mom while
stuffing crackers in his mouth. Kedrick and
Drake just joined
troops at their school.
Hunter is a budding country music singer. “I want an
amplifier,” he said, strumming his new guitar, a birthday
gift. The
sound of Kedrick’s thump, thump, thumping on the drums reverberated from the
boys’ bedroom,
while Shannee yipped with excitement.
“They are
so into music,” Heather Sosenheimer said. It is a wonderful normalizer for a
family who, medically
speaking, is anything but normal.
Doctors
knew some of the boys’ problems were likely genetic, although that is not
always the case. Brain
scans found chiari in Rick, Heather and
daughter Markee Rase, 16, meaning all six family members have it.
It is, for the most part, asymptomatic in Markee and Rick. On
Wednesday, Heather Sosenheimer
underwent surgery in Chicago to
correct her chiari. She remains in intensive care and hopes to be home next
week. Soliciting help from family and friends to care for the boys was
just one more foothill in what is
already a mountain of
needs.
While some people may have chiari and never realize it, “The familial
or genetic chiari patients seem to have
a more virulent form of the
disease,” said Dr. David Frim, chief of neurosurgery at University of Chicago
Comer Children’s Hospital and the boys’ neurosurgeon.
The three
boys share another, more unusual characteristic: double rows of eyelashes, part
of a disorder
called lymphedema-distichiasis. Each has his own
additional medical problems. Drake has a heart defect,
kidney
abnormalities and spina bifida occulta, the mildest form of spina bifida (see
graphic). Kedrick has
high-functioning autism and recently scored
below normal on an IQ test. He has had three surgeries and
Hunter
five to either fix the chiari or to put in or redo a shunt.
Family
pressures
Rick and Heather Sosenheimer know it’s a strain on a marriage when
there is a single child with disabilities.
“The odds are against
us,” Heather Sosenheimer said. But the odds are also almost inconceivable that
two
people with rare genetic conditions marry one another. “I just
can’t go there,” she said. “There are moments
when you want to
blame the other person, when you get defensive. But you can’t blame anything.
These
things just happen.”
Day by day, the couple continues to
pull together. “You have to be communicators … try to find time for
yourselves, little moments … You have to take time to sit back and
relax a bit, catch your breath,” she said.
Markee, who hopes one
day to be a special-education teacher, is a dependable help with the
boys.
When one of the boys cries out in pain in the night, Rick Sosenheimer
often is the one who gets up. He
attends as many doctor
appointments as possible. “It seems like every appointment they find something
new,” he said. He praised his employer of 15 years, United Building
Center, formerly Wolohan Lumber in
Fort Wayne, for granting him
time off when the boys have had surgeries or out-of-town appointments.
Rick
Sosenheimer’s overtime hours help cover medical and living needs, but even that
is a mixed blessing.
His earnings are just over the line to qualify
the family for Medicaid medical coverage. Group health
insurance is
good, but deductibles, co-pays, travel, meals and sometimes hotel costs quickly
add up. Four to
five trips a month to Indianapolis or Chicago are
the norm, which is why Heather does not work outside the
home.
“I always know when we’re going to be making a trip to Chicago
– the price of gas always goes up,”
Heather Sosenheimer said. A
two- to three-day visit to Comer in Chicago runs about $250 – higher if there
is no room at the hospital’s hospitality house. Together, the boys
take 13 medications, a $300-$400 out-of-
pocket monthly
expense.
Despite their bare-bones budget, Heather and Rick Sosenheimer, with
the boys’ encouragement, threw a
joint birthday party in October
for their sons, asking guests to bring a toy donation for Comer. “We
collected over 100 toys for the kids at Comer. The boys loved giving
the toys to the hospital,” Heather
Sosenheimer said.
What the
future holds
The Sosenheimers’ greatest frustration, however, isn’t giving
all the medications or even what they cost. It is
not keeping track
of the doctor appointments or the time and effort required to persistently
advocate for
their special-education services. It is that no one
really knows what the future holds for their sons. Their
sons’
combination of problems is uncharted territory.
“We want to get help and to
help others, but there’s very limited research on pediatric chiari,”
particularly in
conjunction with pseudotumor. “No one really has
answers. There is no data bank for all this information,”
Heather
Sosenheimer said. Some geneticists have told the family the boys may have a
syndrome of some
kind, but to date, no one has an official name for
it.
“This is not Parkinson’s disease, not heart disease, not cancer,”
Heather Sosenheimer said. “It is not getting
attention and not
getting funding for research. It’s going to take a celebrity or famous person’s
kid to have
this before it gets
attention.”
---------------------------------------------------------------------------------
Lymphedema
changes everything
Lymphedema: Condition 'changes everything'
By
Jane Grau
The Salt Lake Tribune
Article Last Updated: 01/29/2007 11:07:13
PM MST
Therapist Nicole Kilgos wraps the hand and arm of Cynthia...
(Paul Fraughton/The Salt Lake Tribune)
Cynthia Minor has a busy
life. She's a health inspector, a violinist and she teaches riding. In between,
she
makes time for therapy.
She has lymphedema, a side effect of
breast cancer surgery.
"It changes everything," Minor said of adapting to
the condition, marked by swelling in one arm. "I could
write a
whole book on coping."
Enter certified lymphedema therapist Nicole Kilgos.
She offers a treatment called "manual lymphatic
drainage," or MLD,
a non-invasive, hands-on technique that reduces the swelling caused when
healing fluids
carried by lymph vessels build up.
Along with
relieving symptoms, Kilgos teaches clients and their loved ones the self-care
required for what
will be a lifelong condition - there's no cure for
it once it appears.
"It's incredibly important that people understand that
therapy isn't a 'treatment' where they go and get taken
care of,"
said Kilgos. "Rather, we teach them how to integrate these exercises into their
daily lives and to live
happier and healthier."
Lymphedema can
occur when lymph nodes or vessels are removed during surgery, from other types
of
cancer
or conditions such as obesity or chronic venous
insufficiency.
The symptoms - uncomfortable heaviness, swelling and
tenderness in the arm and trunk - appear gradually,
but in extreme
cases, can cause such pain that even a ride in the car can be
excruciating.
Without proper therapy, lymphedema compromises the immune
system, so infections can arise quickly in the
affected area. Minor
has noticed that a scratch on her affected arm will take weeks to heal, as
opposed to
days on the other.
She is grateful she was able to
address the condition early. It is not uncommon, said Kilgos, for doctors to
not mention lymphedema to patients, or not know what to do about it
when it occurs.
"We can make it workable even in late stages," said Kilgos,
"but catching it early is wonderful - it makes it
easier to manage,
to integrate into daily life and to prevent further damage to the lymph
system."
---
* JANE GRAU can be contacted at
801-257-8694.
What is lymphedema?
A build-up of lymphatic fluid,
usually in the trunk, arm or leg. The fluid is made up of protein, water, fats
and
wastes from cells; lymph nodes filter wastes and return the
fluid to blood. If lymph vessels or nodes become
damaged, the fluid
cannot move freely and can cause swelling. What causes it? Lymphedema can be
inherited but is usually acquired. Twice as many women as men get
it. The most common causes of acquired
lymphedema are surgery or
radiation treatment for several types of cancer, such as breast, pancreatic,
prostate and testicular cancers. An estimated two to three million
people are affected each year in the U.S.
For more information
about treatment for lymphedema, call Nicole Kilgos at 801-487-8388.
Source:
Society for Vascular
Surgery
--------------------------------------------------
Getting
the Most from your Doctor's Appointment
Doctors spend on
average only a few minutes with each patient they see for routine examinations.
(Of
course, there is often time out of the exam room that is spent
reviewing the chart and records.) The
experience can be both
confusing and frustrating when communication on one or both sides is lacking,
particularly if you're presented with new information to process or
new instructions to follow.
While a visit to the clinic can be intimidating
for anyone, you can lessen the stress and worry associated with
doctor's appointments by taking steps to be sure that you're provided
with all the information you need at
the appointment. There are
also ways you can improve the quality of your care by helping your doctor
develop the best understanding possible of your symptoms and
condition.
Before the appointment, write down a list of things you need
to tell the doctor. Note any concerns or
questions you may have.
Also write down the names and dosages of any prescription, over-the-counter
medications, or supplements you are taking. It is very important
to take this list with you to the appointment
– don't count on
remembering every single item. Before you leave the office, go over the list to
be sure
you've covered everything. This simple step benefits both
you and your doctor by keeping the discussion
focused and ensuring
that all your concerns are addressed.
Don't hesitate to use the words "I
don't understand." Doctors are only human and may not always know
when they haven't explained something well or in terms you can
understand. Never feel embarrassed or shy
about asking for
clarification about something your doctor says. When in doubt, repeat back what
your
doctor has told you and ask if you've got it right. You can
also ask if he or she recommends any specific
reading materials
about your condition.
If your doctor asks questions that sound
embarrassing or overly personal, remember that the information
you
provide enables him or her to better establish a diagnosis, or to determine
which treatment is most
appropriate for you. Never fib in response
to questions about alcohol or drug use, sexual history, or other
lifestyle matters. Be honest about the extent to which you are taking
your prescriptions or following a
treatment plan. Withholding the
truth can affect the quality of your care and can even lead to a wrong
diagnosis.
Finally, the office medical assistants and nurses can
be an additional resource of information. Do not hesitate
to ask
them questions about your concerns as well.
Advance preparation for your
doctor's visit is a vital step toward becoming a partner in your own health
care and an advocate for your health and well-being. A good doctor will
always encourage your desire to
understand as much as possible
about your condition and will welcome your active participation in your
care.
source:
http://www.medicinenet.com
Self-Consciousness, Self-Esteem, and
Lymphedema
The Impact of Lymphedema
Multiple studies have documented
the powerful impact of lymphedema on quality of life. A Canadian survey
of women with lymphedema reported that “The women we spoke to feel their
life, as they knew it, was
changed forever.” The emotional impact
of lymphedema can be so powerful that I devoted an entire book
to
the topic: Overcoming the Emotional Challenges of
Lymphedema.
Self-Consciousness and Self-Esteem
One of the hardest
things about lymphedema is that it is often visible to others. This can make
you very self-
conscious. However, you can decrease
self-consciousness and protect your self-esteem by deliberately
working with your emotions, your thoughts, and your
actions.
Emotions:
Foster positive feelings toward your body. It is,
after all, doing the best it can. Regard your body with
gratitude
and respect for the many ways in which it still functions well. Have sympathy
for its struggles. Offer
it your loving care. Think of yourself as
in partnership with your body.
Thoughts:
Notice thoughts that reduce
feelings of self-consciousness. Some people find it helpful to tell themselves
“I
am more than my physical body. I am not my lymphedema.” Focus on
all the other facets of your self that
make you the unique person
you are. Think about your strengths, your talents, your beliefs and
values.
Actions:
Move forward with your life. Even though it can be hard,
don’t withdraw. Don’t avoid people, places,
things, or activities
just because you aren’t physically perfect.
Handling Others’
Reactions
Strangers may see the swelling or the compression garment or
wrapping. This raises the question of how you
should respond to
stares or questions.
Decide in advance what you want to say. Then rehearse
until it flows smoothly and comfortably.
Here are some examples:
“Thank
you for your concern. It’s nothing to worry about.”
“I have a swelling
condition and this helps control it.”
“I have lymphedema which is a swelling
condition that often happens after cancer treatment. This garment
helps keep the swelling down. Would you like to know more?”
Be
Your (Best) Self
Other people will respond to your manner, and your manner
reflects how you perceive yourself. So focus on
those aspects of
yourself that create feelings of pride, confidence, and comfort. Stand erect,
but relaxed,
with your head up. Make eye contact with others. Smile
and nod often. Use a confident, friendly voice tone.
Let your best
self shine forth. You can be a source of knowledge and inspiration to
others.
Reason for Hope
Acceptance, courage, optimism, and
thankfulness are possible and attainable. Here are quotes taking from
Voices
of Lymphedema. Listen to these individuals who, just like you, live with
lymphedema every day:
“I can rise to meet the challenge.”
“I count my
blessings every day.”
“I find so many ways around this…that it doesn’t seem
that big a deal anymore.”
“I am better, stronger and more resilient than I
ever was before.”
In Conclusion
As Helen Keller once wrote, “Although
the world is full of suffering, it is full also of the overcoming of it.”
Take good care of yourself.
For More Information:
These books
are available through www.Amazon.com, www.BarnesandNoble.com, or can be ordered
by
your local bookstore.
Living Well With Lymphedema – Ehrlich,
Vinje-Harrewijn, & McMahon. San Francisco: Lymph Notes,
2005.
Overcoming the Emotional Challenges of Lymphedema – McMahon.
San Francisco: Lymph Notes, 2006.
Voices of Lymphedema – (Eds.) Ehrlich
& McMahon. San Francisco: Lymph Notes, 2007.
Lymphedema Caregiver’s
Guide: Arranging and Home Care – Kearse, McMahon, & Ehrlich. San
Francisco:
Lymph Notes, 2009.
May, 2011 Elizabeth McMahon, PhD
Author
Bio:
Dr McMahon (www.elizabeth-mcmahon.com) works as a clinical psychologist
in California and has over 30
years experience helping patients,
many with chronic medical conditions. She became interested in
lymphedema after a family member developed the condition. She serves on
the editorial advisory board of
www.LymphNotes.com, an online
information resource and support group for persons with lymphedema,
their family and friends, and for lymphedema therapists.
In addition
to lymphedema-related topics, she writes and speaks on decreasing anxiety,
preventing burnout,
overcoming life challenges, and increasing
personal happiness.
Effects
Lymphedema can affect your self-image, interfere with your
routine activities and what clothes you can
wear, and remind you of
the disease you thought you'd overcome. Your arm may feel heavy as lead, an
appendage that is somehow "you" but "not you."
Your arms and legs
may also ache, feel tired or uncomfortable, or feel tight or painful. It may
look swollen
and unattractive. Strangers may ask you why your arm
or hand is swollen, or why you're wearing a
compression sleeve or
bandages. Adding insult to injury is the continuous medical care and expense of
treating this unpleasant condition.
Most cases of lymphedema
aren't disabling or terribly uncomfortable. But once you do have an episode,
the
condition tends to persist or recur, varying in degree. The
lymphedema may go away on its own, or it may
clear up only if the
cause is treatable (and treated quickly).
Episodes may last for days or
weeks. If your swelling lasts for months, it's likely to be permanent, but
remember that even the most severe cases can be substantially improved
with ongoing treatment. Severe
cases of lymphedema can cause
thickening of the skin, stiffness and hardness of the arm and hand, and
leakage of fluid from minor injuries. Fortunately, such severe cases
are unusual.
People have different emotional responses to developing
lymphedema, and all of them are perfectly normal.
You might be
angry that you weren't adequately warned about the possibility of developing
lymphedema.
Even if you were warned, you might still feel angry because
lymphedema is a chronic condition that you will
need to manage in
some way for the rest of your life. It's common to be frustrated with
treatment, since it
can require a large commitment of time, effort,
and money. Other emotional responses include depression
and
feelings of helplessness.
Whatever your feelings about lymphedema, it's
important to talk about them with friends, family, and health
professionals. It can help to know that you have choices about how to
manage your lymphedema. An
occupational or physical therapist can
explain your treatment options and help you decide which is best for
you.
It takes a lot of patience, and trial and error. Not every treatment option
works for every
person.
----------------------------------------------------
Your
feelings about lymphoedema
Having lymphoedema may bring about a
variety of feelings, which arise not only from the discomfort of the
condition
itself, but also from the cancer and its treatment, which caused the
lymphoedema to develop.
Embarassment
The lymphoedema swelling
may be a constant reminder to you that you have had treatment for cancer -
something you perhaps had hoped to forget as much as possible. If the
swelling is severe, you may feel
embarrassed and self-conscious
about it.
Try not to shut yourself away. Almost certainly, the swelling is more noticeable to you than it is to others. If
you are nervous
about going out in public at first, ask someone you know to come with you. You
will
probably find that no one makes an issue of your
lymphoedema.
If you have very obvious swelling, some people will
inevitably be curious, especially children. Many people
find it
helpful to rehearse what they will say in such situations. Your lymphoedema
therapist or nurse may be
able to help you plan and practise your
responses. Or you may prefer to talk about it with other people who
have lymphoedema.
You could decide how much you wish to say
about your condition, whether to refer to your cancer or
treatment.
Once you have a prepared response, you are less likely to be thrown by any
remark or question
directed to you. You may even find yourself
actively helping others to overcome any awkwardness they may
feel.
As your lymphoedema becomes more under control, and as you
get more used to it, you will almost
certainly find that your feelings of embarrassment lessen. You will probably realise that true friends care for
you because of the person you are, not for your
appearance, and this will increase your self-confidence and
make
you feel more in control of your life.
Anger
You may be
feeling very angry that you have to deal with the burden and inconvenience of
lymphoedema.
You may have been expecting to be feeling well again
and leading a normal life.
If your lymphoedema began shortly after your
cancer treatment, it may seem like the last straw, on top of all
the physical and emotional upheaval caused by having cancer. It is
quite natural for you to feel angry about
it; you may find the
anger becomes less as you become accustomed to the daily treatment routine and
the
swelling begins to respond to the
treatment.
Resentment
Having lymphoedema requires extra
effort in taking care of yourself. Following your treatment routine can
take up a lot of time. You may feel resentful about this, especially if
others seem free to get on with their
daily lives.
Try not
to bottle up your feelings but talk to the people close to you about how you
feel. Between you, you
may come up with ways in which they can
help. For example, someone could learn to carry out the
lymphatic
massage for you, give you lifts to your treatment centre or perhaps help with
the shopping, so that
you do not have to carry heavy
loads.
Once you have become used to the routine of treating your
lymphoedema and following the guidelines for
controlling it, you
will probably find it less of a burden and feel more able to enjoy your normal
activities.
Some people find the swelling eases within a short
time, while for others it can take many months, but don't
give up -
there is nearly always some improvement with
treatment.
Depression
Lymphoedema is an ongoing problem
and at times you are likely to feel low or depressed about your
situation. You may find it helpful to talk to other people who are
living with lymphoedema, and the nurses at
Cancerbackup can give
you information about support groups in your area. Your doctor may be able to
refer you for help.
Lymphoedema may affect the way you feel
about yourself, which may have a negative impact on your
relationships with other people. People often need to feel happy with
their bodies in order to have a fulfilling
sex life.
Fear
that a partner - even a long-standing one - may be put off by the lymphoedema
can make some people
scared of physical relationships. The
lymphoedema may also make it physically difficult to have sex.
Often,
talking about how you are feeling can help to relieve any worries you have
about how you look.
Some people are able to talk with their partner,
others prefer to discuss things with a counsellor or sexual
therapist. Your doctor or nurse can make a referral to a therapist for
you if this would be helpful.
http://www.cancerbackup.org.uk/Resourcessupport/Symptomssideeffects/Lymphoedema/Yourfeelings
----------------------------------------------------------
Medically
speaking – anything but normal
By Jennifer L. Boen
[email protected]
Heather Sosenheimer picked up what
looked like a photo album. But the pages contained no pictures of her
three
little boys, who were playing in the backyard, or of her teenage daughter, not
yet home from school.
In the see-through pockets were business cards, dozens
of them. Rarely a week goes by when Heather and
Rick Sosenheimer do
not use the book to call a pediatric neurosurgeon, ophthalmologist or another
of the
many medical specialists their sons
require.
Conditions
The unraveling of the family’s medical problems began
in September 2005 with now-7-year-old Kedrick’s
diagnosis of
pseudotumor cerebri (see graphic below). His parents finally had an explanation
for his intense
screaming. “I kept saying, ‘Something isn’t right.
He’d get this scream and wouldn’t quit screaming,”
Heather
Sosenheimer recalled. In a spinal tap, Kedrick’s cerebrospinal pressure was 23;
normal is 5-15 in a
child. His fluid pressure fluctuates, sometimes
too high, sometimes too low. Either way, he is in pain. “He
can
only be up for about two hours before he has to lie down,” Heather Sosenheimer
said.
To an onlooker, all seems well with her son. It’s a mixed blessing.
“People don’t understand why Kedrick
can suddenly start screaming.
They can’t see that he has a very, very bad headache that won’t go away.
They’re thinking, ‘Can’t you get control of him?’ ” Heather Sosenheimer
said.
Within six months of Kedrick’s diagnosis, the family learned all three
boys have rare brain conditions that
include chiari malformation,
pseudotumor (see graphic) or cysts. The pressure around the brain of Hunter, 6,
was 55. Damage to the optic nerve, especially in his left eye, had
already occurred.
Drake Sosenheimer, 8, has three cysts in his brain and
chiari malformation, although, unlike his brothers, his
chiari has
not required surgery.
The family thought Hunter’s shunt, his third, was
working OK until a few weeks ago. An eye specialist at
Riley
Hospital for Children in Indianapolis said Hunter’s vision is rapidly getting
worse. When Heather
Sosenheimer heard the news, guilt swept over
her: “I have been so concerned with Kedrick that I have been
ignoring Hunter.
“But life is what you make it,” she said. “It’s not
stopping just because they have these problems. You can
cry
yourself underneath the table. It isn’t going to make things any
different.”
Daily life
The house comes alive when the school day ends.
Seconds after getting off the school bus, the front door
flies open
and the boys head to the cupboard for a snack of peanut butter crackers. On the
kitchen wall is a
plaque that reads: “There will be no crisis today. My schedule is full!” It is wishful thinking for their mother.
The
boys attend Haley Elementary School and have chores around the house, including
helping take care of
the new puppy, Shannee; picking up toys; and
doing homework.
“Do we have Scouts tonight?” Drake asked his mom while
stuffing crackers in his mouth. Kedrick and
Drake just joined
troops at their school.
Hunter is a budding country music singer. “I want an
amplifier,” he said, strumming his new guitar, a birthday
gift. The
sound of Kedrick’s thump, thump, thumping on the drums reverberated from the
boys’ bedroom,
while Shannee yipped with excitement.
“They are
so into music,” Heather Sosenheimer said. It is a wonderful normalizer for a
family who, medically
speaking, is anything but normal.
Doctors
knew some of the boys’ problems were likely genetic, although that is not
always the case. Brain
scans found chiari in Rick, Heather and
daughter Markee Rase, 16, meaning all six family members have it.
It is, for the most part, asymptomatic in Markee and Rick. On
Wednesday, Heather Sosenheimer
underwent surgery in Chicago to
correct her chiari. She remains in intensive care and hopes to be home next
week. Soliciting help from family and friends to care for the boys was
just one more foothill in what is
already a mountain of
needs.
While some people may have chiari and never realize it, “The familial
or genetic chiari patients seem to have
a more virulent form of the
disease,” said Dr. David Frim, chief of neurosurgery at University of Chicago
Comer Children’s Hospital and the boys’ neurosurgeon.
The three
boys share another, more unusual characteristic: double rows of eyelashes, part
of a disorder
called lymphedema-distichiasis. Each has his own
additional medical problems. Drake has a heart defect,
kidney
abnormalities and spina bifida occulta, the mildest form of spina bifida (see
graphic). Kedrick has
high-functioning autism and recently scored
below normal on an IQ test. He has had three surgeries and
Hunter
five to either fix the chiari or to put in or redo a shunt.
Family
pressures
Rick and Heather Sosenheimer know it’s a strain on a marriage when
there is a single child with disabilities.
“The odds are against
us,” Heather Sosenheimer said. But the odds are also almost inconceivable that
two
people with rare genetic conditions marry one another. “I just
can’t go there,” she said. “There are moments
when you want to
blame the other person, when you get defensive. But you can’t blame anything.
These
things just happen.”
Day by day, the couple continues to
pull together. “You have to be communicators … try to find time for
yourselves, little moments … You have to take time to sit back and
relax a bit, catch your breath,” she said.
Markee, who hopes one
day to be a special-education teacher, is a dependable help with the
boys.
When one of the boys cries out in pain in the night, Rick Sosenheimer
often is the one who gets up. He
attends as many doctor
appointments as possible. “It seems like every appointment they find something
new,” he said. He praised his employer of 15 years, United Building
Center, formerly Wolohan Lumber in
Fort Wayne, for granting him
time off when the boys have had surgeries or out-of-town appointments.
Rick
Sosenheimer’s overtime hours help cover medical and living needs, but even that
is a mixed blessing.
His earnings are just over the line to qualify
the family for Medicaid medical coverage. Group health
insurance is
good, but deductibles, co-pays, travel, meals and sometimes hotel costs quickly
add up. Four to
five trips a month to Indianapolis or Chicago are
the norm, which is why Heather does not work outside the
home.
“I always know when we’re going to be making a trip to Chicago
– the price of gas always goes up,”
Heather Sosenheimer said. A
two- to three-day visit to Comer in Chicago runs about $250 – higher if there
is no room at the hospital’s hospitality house. Together, the boys
take 13 medications, a $300-$400 out-of-
pocket monthly
expense.
Despite their bare-bones budget, Heather and Rick Sosenheimer, with
the boys’ encouragement, threw a
joint birthday party in October
for their sons, asking guests to bring a toy donation for Comer. “We
collected over 100 toys for the kids at Comer. The boys loved giving
the toys to the hospital,” Heather
Sosenheimer said.
What the
future holds
The Sosenheimers’ greatest frustration, however, isn’t giving
all the medications or even what they cost. It is
not keeping track
of the doctor appointments or the time and effort required to persistently
advocate for
their special-education services. It is that no one
really knows what the future holds for their sons. Their
sons’
combination of problems is uncharted territory.
“We want to get help and to
help others, but there’s very limited research on pediatric chiari,”
particularly in
conjunction with pseudotumor. “No one really has
answers. There is no data bank for all this information,”
Heather
Sosenheimer said. Some geneticists have told the family the boys may have a
syndrome of some
kind, but to date, no one has an official name for
it.
“This is not Parkinson’s disease, not heart disease, not cancer,”
Heather Sosenheimer said. “It is not getting
attention and not
getting funding for research. It’s going to take a celebrity or famous person’s
kid to have
this before it gets
attention.”
---------------------------------------------------------------------------------
Lymphedema
changes everything
Lymphedema: Condition 'changes everything'
By
Jane Grau
The Salt Lake Tribune
Article Last Updated: 01/29/2007 11:07:13
PM MST
Therapist Nicole Kilgos wraps the hand and arm of Cynthia...
(Paul Fraughton/The Salt Lake Tribune)
Cynthia Minor has a busy
life. She's a health inspector, a violinist and she teaches riding. In between,
she
makes time for therapy.
She has lymphedema, a side effect of
breast cancer surgery.
"It changes everything," Minor said of adapting to
the condition, marked by swelling in one arm. "I could
write a
whole book on coping."
Enter certified lymphedema therapist Nicole Kilgos.
She offers a treatment called "manual lymphatic
drainage," or MLD,
a non-invasive, hands-on technique that reduces the swelling caused when
healing fluids
carried by lymph vessels build up.
Along with
relieving symptoms, Kilgos teaches clients and their loved ones the self-care
required for what
will be a lifelong condition - there's no cure for
it once it appears.
"It's incredibly important that people understand that
therapy isn't a 'treatment' where they go and get taken
care of,"
said Kilgos. "Rather, we teach them how to integrate these exercises into their
daily lives and to live
happier and healthier."
Lymphedema can
occur when lymph nodes or vessels are removed during surgery, from other types
of
cancer
or conditions such as obesity or chronic venous
insufficiency.
The symptoms - uncomfortable heaviness, swelling and
tenderness in the arm and trunk - appear gradually,
but in extreme
cases, can cause such pain that even a ride in the car can be
excruciating.
Without proper therapy, lymphedema compromises the immune
system, so infections can arise quickly in the
affected area. Minor
has noticed that a scratch on her affected arm will take weeks to heal, as
opposed to
days on the other.
She is grateful she was able to
address the condition early. It is not uncommon, said Kilgos, for doctors to
not mention lymphedema to patients, or not know what to do about it
when it occurs.
"We can make it workable even in late stages," said Kilgos,
"but catching it early is wonderful - it makes it
easier to manage,
to integrate into daily life and to prevent further damage to the lymph
system."
---
* JANE GRAU can be contacted at
801-257-8694.
What is lymphedema?
A build-up of lymphatic fluid,
usually in the trunk, arm or leg. The fluid is made up of protein, water, fats
and
wastes from cells; lymph nodes filter wastes and return the
fluid to blood. If lymph vessels or nodes become
damaged, the fluid
cannot move freely and can cause swelling. What causes it? Lymphedema can be
inherited but is usually acquired. Twice as many women as men get
it. The most common causes of acquired
lymphedema are surgery or
radiation treatment for several types of cancer, such as breast, pancreatic,
prostate and testicular cancers. An estimated two to three million
people are affected each year in the U.S.
For more information
about treatment for lymphedema, call Nicole Kilgos at 801-487-8388.
Source:
Society for Vascular
Surgery
--------------------------------------------------
Getting
the Most from your Doctor's Appointment
Doctors spend on
average only a few minutes with each patient they see for routine examinations.
(Of
course, there is often time out of the exam room that is spent
reviewing the chart and records.) The
experience can be both
confusing and frustrating when communication on one or both sides is lacking,
particularly if you're presented with new information to process or
new instructions to follow.
While a visit to the clinic can be intimidating
for anyone, you can lessen the stress and worry associated with
doctor's appointments by taking steps to be sure that you're provided
with all the information you need at
the appointment. There are
also ways you can improve the quality of your care by helping your doctor
develop the best understanding possible of your symptoms and
condition.
Before the appointment, write down a list of things you need
to tell the doctor. Note any concerns or
questions you may have.
Also write down the names and dosages of any prescription, over-the-counter
medications, or supplements you are taking. It is very important
to take this list with you to the appointment
– don't count on
remembering every single item. Before you leave the office, go over the list to
be sure
you've covered everything. This simple step benefits both
you and your doctor by keeping the discussion
focused and ensuring
that all your concerns are addressed.
Don't hesitate to use the words "I
don't understand." Doctors are only human and may not always know
when they haven't explained something well or in terms you can
understand. Never feel embarrassed or shy
about asking for
clarification about something your doctor says. When in doubt, repeat back what
your
doctor has told you and ask if you've got it right. You can
also ask if he or she recommends any specific
reading materials
about your condition.
If your doctor asks questions that sound
embarrassing or overly personal, remember that the information
you
provide enables him or her to better establish a diagnosis, or to determine
which treatment is most
appropriate for you. Never fib in response
to questions about alcohol or drug use, sexual history, or other
lifestyle matters. Be honest about the extent to which you are taking
your prescriptions or following a
treatment plan. Withholding the
truth can affect the quality of your care and can even lead to a wrong
diagnosis.
Finally, the office medical assistants and nurses can
be an additional resource of information. Do not hesitate
to ask
them questions about your concerns as well.
Advance preparation for your
doctor's visit is a vital step toward becoming a partner in your own health
care and an advocate for your health and well-being. A good doctor will
always encourage your desire to
understand as much as possible
about your condition and will welcome your active participation in your
care.
source:
http://www.medicinenet.com
Self-Consciousness, Self-Esteem, and
Lymphedema
The Impact of Lymphedema
Multiple studies have documented
the powerful impact of lymphedema on quality of life. A Canadian survey
of women with lymphedema reported that “The women we spoke to feel their
life, as they knew it, was
changed forever.” The emotional impact
of lymphedema can be so powerful that I devoted an entire book
to
the topic: Overcoming the Emotional Challenges of
Lymphedema.
Self-Consciousness and Self-Esteem
One of the hardest
things about lymphedema is that it is often visible to others. This can make
you very self-
conscious. However, you can decrease
self-consciousness and protect your self-esteem by deliberately
working with your emotions, your thoughts, and your
actions.
Emotions:
Foster positive feelings toward your body. It is,
after all, doing the best it can. Regard your body with
gratitude
and respect for the many ways in which it still functions well. Have sympathy
for its struggles. Offer
it your loving care. Think of yourself as
in partnership with your body.
Thoughts:
Notice thoughts that reduce
feelings of self-consciousness. Some people find it helpful to tell themselves
“I
am more than my physical body. I am not my lymphedema.” Focus on
all the other facets of your self that
make you the unique person
you are. Think about your strengths, your talents, your beliefs and
values.
Actions:
Move forward with your life. Even though it can be hard,
don’t withdraw. Don’t avoid people, places,
things, or activities
just because you aren’t physically perfect.
Handling Others’
Reactions
Strangers may see the swelling or the compression garment or
wrapping. This raises the question of how you
should respond to
stares or questions.
Decide in advance what you want to say. Then rehearse
until it flows smoothly and comfortably.
Here are some examples:
“Thank
you for your concern. It’s nothing to worry about.”
“I have a swelling
condition and this helps control it.”
“I have lymphedema which is a swelling
condition that often happens after cancer treatment. This garment
helps keep the swelling down. Would you like to know more?”
Be
Your (Best) Self
Other people will respond to your manner, and your manner
reflects how you perceive yourself. So focus on
those aspects of
yourself that create feelings of pride, confidence, and comfort. Stand erect,
but relaxed,
with your head up. Make eye contact with others. Smile
and nod often. Use a confident, friendly voice tone.
Let your best
self shine forth. You can be a source of knowledge and inspiration to
others.
Reason for Hope
Acceptance, courage, optimism, and
thankfulness are possible and attainable. Here are quotes taking from
Voices
of Lymphedema. Listen to these individuals who, just like you, live with
lymphedema every day:
“I can rise to meet the challenge.”
“I count my
blessings every day.”
“I find so many ways around this…that it doesn’t seem
that big a deal anymore.”
“I am better, stronger and more resilient than I
ever was before.”
In Conclusion
As Helen Keller once wrote, “Although
the world is full of suffering, it is full also of the overcoming of it.”
Take good care of yourself.
For More Information:
These books
are available through www.Amazon.com, www.BarnesandNoble.com, or can be ordered
by
your local bookstore.
Living Well With Lymphedema – Ehrlich,
Vinje-Harrewijn, & McMahon. San Francisco: Lymph Notes,
2005.
Overcoming the Emotional Challenges of Lymphedema – McMahon.
San Francisco: Lymph Notes, 2006.
Voices of Lymphedema – (Eds.) Ehrlich
& McMahon. San Francisco: Lymph Notes, 2007.
Lymphedema Caregiver’s
Guide: Arranging and Home Care – Kearse, McMahon, & Ehrlich. San
Francisco:
Lymph Notes, 2009.
May, 2011 Elizabeth McMahon, PhD
Author
Bio:
Dr McMahon (www.elizabeth-mcmahon.com) works as a clinical psychologist
in California and has over 30
years experience helping patients,
many with chronic medical conditions. She became interested in
lymphedema after a family member developed the condition. She serves on
the editorial advisory board of
www.LymphNotes.com, an online
information resource and support group for persons with lymphedema,
their family and friends, and for lymphedema therapists.
In addition
to lymphedema-related topics, she writes and speaks on decreasing anxiety,
preventing burnout,
overcoming life challenges, and increasing
personal happiness.