I have primary lymphedema in both legs which became visible when I was about 15 years old, 40 years ago. My story highlights the need for educating professionals in all areas of health care and the amazing success that comes with self-care as well as the sad failure with the lack of self-care.
For 35 years, no doctor knew why the swelling in my legs was increasing and all gave me the same advice to exercise more, diet, and take water pills. In the early 1990’s, I dedicated five years to exercising 1-1/5 hrs per day 4-5 days per week, an ongoing stringent diet and occasional water pills that left me with injured feet, increased weight gain and continued swelling. In 2001 things rapidly worsened and by 2006 both legs were swollen to the size of my thighs all the way to my ankles. Frequently, swelling was so severe the skin in the lower legs would actually tear and weep lymph fluid. My weight was over 300 lbs largely in part to inability to move and I walked with a cane because my knees were in constant pain and often couldn’t bend.
In Dec 2006 I met a Nurse Practioner who, to my utter disbelief, recognized my condition as lymphedema. She referred me to a Physical Therapist within the same medical group for treatment. I began the process of compression wrapping. There was Hope!! and Freedom!!! At the time, I had great insurance that covered much of the costs of 3 months of physical therapy and full lower body compression garments. Self-care gave my life back, gave me mobility and I lost over 60 lbs.
Sadly, my story shows what happens when self-care disappears. In 2011 I had been unemployed for over 2 years with no insurance or funds to replace the worn out compression garments at over $1,500 per leg. I got a temporary job working 9-12 hrs a day without insurance. Although I began to recover financially, I still couldn’t afford the full cost of garments. The alternative to compression garments is daily re-bandaging. On just one leg, that takes up to 2 hours a day for the all the processes and wasn’t a practical option in my mind with that work schedule.
By early 2012 the swelling was as bad as when I was first diagnosed and the damage was increasing. Both calves were covered with deep blisters of lymph fluid that were becoming fibrous in places and my knees were again completely compromised due to the swelling. My weight was nearly 300 lbs again and the cane a regular necessity.
Eventually, I had insurance coverage, an income, a reasonable work schedule, and I chose to invest time and effort in self-care again. The last round of physical therapy wrapping took over 5 months to accomplish, nearly twice as long as the first treatment. Lack of manageable care exacts a high price in health and dollars!
Whether it is lack of access to compression garments for lack of funds or insurance coverage or simply the lack of self-care by personal choice or ability, the damage done by can easily be controlled when self-care is implemented again. The additional damage to my legs is still there but self-care again has given back my ability to function, to generate income to afford the garments, and to keep my health increasingly improving to prevent lymphedema complications or other costly health issues.
I’ve learned how important it is to be a self-advocate for health in all areas of life. I actively pursue knowledge and share what I learn regarding alternative health care professionals, herbalism, essential oils, and many other disciplines for health that can be helpful in the pursuit to have a healthy thriving body and less health care expense.
