I became ill 5 years ago and couldn’t get even one doctor to recognize my conditions, despite bringing them printed information from experts, detailing and accurately describing the symptoms I had. This resulted in no treatment, worsening of my health, the addition of many medications, many of which caused further inflammation and other health disorders.
My doctors would say, “you don’t have this, we don’t know what ‘this’ is but we know you don’t have it.” I have it. I have it badly enough that I must keep my legs elevated as much as possible, try to perform self-MLD, and deal with the issue of Medicaid refusing to cover the necessary compression garments that would act as a second skin that would allow the return of lymphatic fluid to main lymph collection sites, then elimination via heart and urine. I was just denied a compression pump for home use that is relatively inexpensive and could help me very much.
I am disabled. I did not have to become disabled but the lack of awareness of lymphatic diseases by physicians and the refusal by Medicaid and Medicare to adequately diagnose and treat these life-altering conditions has contributed enormously to my being disabled. I went from 125 lbs to 210 lbs in less than 18 months. No one would help me. I finally went to Dr. Karen Herbst in San Diego to get the diagnosis I needed so that my doctor would believe me and I could get some kind of treatment to help me deal with the horrific pain. The permanent damage was unnecessary.
I am no longer the active, useful, vital woman I was only a few short years ago. I am penniless, cannot get the compression garments I need to keep the lymphatic fluid from back flowing through the damaged one-way valves. I am lucky that I have a place to live. I am resourceful, I will do whatever it takes to improve my health. It is my responsibility. From the age of 14 I worked and paid into this fund should I become in need of it and now that I am in need, no help for me is available. I am 48 but feel like I am 80. If I stand up within 10 minutes the lymphatic fluid pools in my legs. it is in my legs, hips, abdomen, torso, arms and back. I am ill but Medicaid will not provide the simple measures that could improve my function and my quality of life.
If we cannot change this law I cannot estimate the unnecessary neglect of patients who suffer from lymphedema and related diseases. It is inestimable. No appeal to Medicaid will change their stance on not providing compression garments unless one has ulcers on their legs. I will continue to appeal until my fingers bleed from writing anyone who will listen. This must change. It is our government; we decide our policies.
Speak up and act, write letters, tell your neighbors, inform anyone who will listen. This condition left untreated is akin to not treating any other disabling condition. It doesn’t have to be so.
