I have struggled all my life with a variety of health complications, weight, hair loss, fatigue, pain, and then cysts on various organs, and a growing number of lipomas.

In early 2006 my ever-confusing world changed. I was diagnosed with Dercum’s Disease by Dr. Karen Herbst. Suddenly I had some way to come to grips with what was happening to my body. Thanks to tireless dedication and exhaustive research on the part of Dr. Herbst, and the efforts of those working towards increased awareness and funding for research of Rare Adipose Disorders (RADs), I had hope for effective treatment.

Dr. Herbst did indeed come to understand facets of this disorder that hadn’t been previously addressed. With understanding came new treatments. For 6 years accessing treatment has been slightly more painful than smashing my head into a concrete floor with an anvil.

Once we disengaged ourselves from the HMO my husband used to work for (and moved across the country) the search began for a doctor that would help me in my journey to become as healthy as I can possibly be. After a year and a half of false starts, I found a doctor in Ann Arbor, Michigan that was a great fit for me. It’s nearly a 4 hour drive each way, but well worth it.

This past week I received my Flexitouch, a sequential gradient pump for the treatment of lymphedema, which has also proven to be quite effective for lipedema as well. Though the thought is somewhat cringe-worthy, my hope is that by documenting via blogging and pictures, I can increase awareness of RADs, and demonstrate visibly the financial benefits for patients, insurers, and society of successfully treating people with these disorders.

In addition to the Flexitouch, I will be treated by an Occupational Therapist who herself has lymphedema, and thus far has proven to be an incredible resource as well as being incredibly skilled at MLD (manual lymphatic drainage). We will additionally be working toward getting compression garments that will help prevent fluid from accumulating between treatments. At this point just can’t express in words how thrilled I am to have the pump. Not only have we already seen signs of reduction of leg and trunk circumference, but my pain levels (in my legs at least) are dramatically reduced.

So that’s the story so far. Stay tuned, I’m hoping for a very happy ending…