57 year old female with bilateral primary lymphedema
Authored by C.J.Y.
I am a 57 yr. old female with primary lymphedema (le)bilateral,
lower extremities. I believe I have had it at least 20 years,
but diagnosis was only 10-12 yrs ago. My left leg is quite a bit
worse than my right, and both are becoming worse as time passes.
The skin has deteriorated terribly, with blistering, ulcerations,
weeping, various kinds of infections (including staph), hardening
in places, discoloration, scaling, fissures, some numbness in
places, and assorted other more minor manifestations. There is
also a constant battle with yeast infections where the skin at
my ankles overlaps itself.
I have read the other chronicles at this site and am thrilled
to hear of so much success with bandaging, compression machines
and other remedies. Like some other writers I live alone and
can't apply bandages to myself (as soon as you move they fall
down, as others have testified). I also have a snazzy compression
machine and two sleeves that I can't use alone. I am
unable to bend enough to get the sleeves on my legs, and my
legs tend to sweat so much the rubberized fabric of the sleeves
sticks to my legs and then I can't get them off! I haven't used
the machine for several years as my knees are too swollen now.
Like almost all the rest of you, getting insurance coverage
for the le has been a real struggle. As one writer commented,
they are willing to pay to cut your legs off, but not willing to
pay to keep them! Some have had successes though and every
step gained could ultimately help all of us.
What I didn't see discussed much was the impact the le has on
a person emotionally. I was a fairly healthy person, very lucky
in many ways. I enjoyed a wide range of activities; sports,
hiking, camping, yard work, sewing, cooking, my pets, attending
festivals, shows, sightseeing, things we all do and rarely consider
how blessed we are to be able to do. Now, I can't even
wear a pair of shoes! My feet are grossly swollen. If I didn't
sew I wouldn't have clothes to wear. Before this year is out I
expect I will have to give up driving my car. Absolutely everything
I want to do has to be considered carefully because of the
le and the limitations it places on me, from the amount of space
I need to keep from bumping into something with my 'tree-trunk'
legs to the distance involved and whether I can go that far
carrying the weight of my legs, and keep breathing and upright.
I had to take an early disability retirement which has isolated
me. When I do go out (less and less frequently) I hate being
stared at, I hate seeing little kids hide behind mom or dad's
legs. Mom and dad are no help, they're staring too. And, as
others have written there is the frustration with the medical
world. The 'Oh well, there's nothing I can do' attitude of the
doctors and I've seen plenty of them, too. I've been hospitalized
four times with swelling and infections, treated, and sent
back home with no follow-up, no expectations, and no hope.
Lymphedema is a disorder that needs to be out in the open and there
needs to be ongoing research in ALL aspects of it. We need
greater awareness and certainly we need better coverage by insurance
companies, Medicare, and state health coverage programs.
Thank you so much for giving me space to 'sound off' about
my experiences with this disorder, and for the privilege of
reading about fellow sufferers and their experiences and success.
Since getting on the net in just the past few days this is the
FIRST time I have been able to read about anyone else, in all
these years, who could relate to my disorder, and I can see that
I am not as alone as I thought. Am so grateful they took the
time to write, too.
cjy101@popaccount.com
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