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…
Mary Compton said:
I can’t wait to be on this journey with you and I will share with others. It is wonderful when you have been struggling with years due to health issues to see ligtht at the end of a tunnel. To read and see what is happening with someone else can give the slightlest bit of hope for others. From CRPS for me I can totally get this.
Shawn Sykes said:
I want to come on you journey to, I will be here for you. Love and smiles
Keith D. said:
I don’t know much about this disease or others like it myself, but I’m always happy to see and support people who are working to help keep others from suffering needlessly. Good luck to you, and to your future readers!
Crystal said:
The support is much appreciated. This is a real push the envelope thing for me, but it’s not just my welfare at stake so… onward. 🙂
Nicolase said:
You’re a brave girl doing a great thing. I am excited to see the outcome!
Crystal said:
Me too, Nicolase, me too. 🙂
Reza said:
Thank you for your blog. I am an MLD therapist from the UK and treat individuals with similar conditions. I will follow your progress and will be pleased to share with you some insight into your condition. Good luck.
Crystal said:
Reza I’m in an insurance holding pattern once again, but hope to get back to blogging soon. 🙂
Thanks for the work you do, MLD makes such a difference for me. Just waiting on compression to keep the progress moving forward!
I look forward to your insights as well. Lots of folks here still strugging for a diagnosis and access to treatment. Education is key, so I love hearing from folks like you!