I am 39 years old, a wife and a mother of three, and I am also a small
business owner. I have secondary lymphedema in my left leg. About 11 years
ago, I woke up and my left ankle was swollen to about double its size. I had
no idea what was going on; I had had several injuries to my leg/hip in the
past, but nothing recently. Test after test, bad diagnoses after bad
diagnoses . . . nothing helped. The doctors really didn’t have any answers
and told me to lose weight. Finally in 2005, out of desperation, I went to a
podiatrist and paid out-of-pocket. At this time, my toes were square and
hard, the skin on my ankle was also hard and fibrotic. I could not fit my
foot into a shoe and could not walk without extreme pain. He took one look
at me and said “lymphedema.” He explained to me how serious this was and
that I needed Manual Lymph Drainage Massage and needed to wrap and to wear a
compression garment. He told me if I did not get on top of this, and stay on
top of it, the complications were very serious, even death. He wrote a note
to my primary health care provider, explaining what I had and asking him to
refer me to therapist who could treat me. I was so happy, thinking FINALLY
there was a diagnosis, and they could “fix” me. How wrong I was!
My insurance did not want to cover any treatment for me. So I started what
became a long line of battles with my insurance, which finally agreed to pay
for 8 weeks of treatment. The therapist taught me how to do Self Manual
Lymph Drainage and how to do Multi Layer Compression Wrap. It took weeks and
weeks of working, but I got the swelling down and got most of the hard
fibrotic tissue worked out. Then I was fitted with a two-piece custom
compression garment. Wearing the garment is not comfortable-it is heavy, it
is hot, it binds in places from time to time, but it is better than not
being able to walk.
My insurance has paid for the compression garments from time to time, but
only after many denials, followed by many appeals. Two years ago, I took my
denial to the State Insurance Review Board and the Review Board overturned
the denial and ruled that my insurance needed to pay for two garments every
six months. Again, I was so happy, thinking at least my garments would be
taken care of. Again, I was wrong! Once the year was over, it was back to
denials, and this time I have not had success. Now, the medical group has
told my doctor not to prescribe them for me, even though this is the only
approved treatment according to their own documents. A compression garment
is only effective for about three months, and then it wears out. My toe cap
and custom garment cost just under $900. If I don’t wear it, I swell and
have a higher risk of infection and complications, including death. But
aside from all that, when I don’t wear my garment, I hurt; when I hurt, I
get frustrated; when I get frustrated, it makes my life miserable, both in
my family life and my business life. I am a portrait photographer and am on
my feet a lot, so when I hurt so bad I can hardly stand, it is very
difficult to make others smile
Lymphedema is a not only physically painful, but also emotionally painful.
It isn’t fun to know you look like a freak, to “feel” people are always
looking at you. It used to bother me a lot. However, the past couple of
years I have used it as a tool to bring awareness to people.
My lymphedema was caused from being in an abusive relationship for a long
time-being beaten and kicked damaged my lymphatic system. Lymphedema can be
caused by injuries, surgery, insect bites, infection, radiation and some
people are born with missing or defective lymph nodes. This can affect
anyone. Lymphedema is also a huge concern for women who have survived breast
cancer, either because they had to have lymph nodes removed, or they were
damaged by the radiation.
It is sad that so many people are left disfigured, in pain and immobile,
simply because they are left undiagnosed, or untreated.
