Lymphedema has had a profound effect on my life and it started at a young age. As a child in middle school, I remember my feet being swollen. My mother had the hardest time trying to find shoes that fit my feet at age 10. She would often invest large amounts of money in a pair of shoes that would be too uncomfortable for me to wear all day in school. There are many pictures of me as a child with my chubby legs and my swollen feet bubbling out of my shoes. I remember when most kids were out running and playing I was just relieved to go home and take my shoes off.
As an adult I developed a legion of physical ailments. I had a severe case of osteoarthritis at age 25.I was also diagnosed with Fibromyalgia. A car accident at age 26 caused spinal issues that would cause me difficulties as well. After a total hip replacement at age 31, I developed Reflex Sympathetic Dystrophy. I had a lot of challenges to overcome as a young adult.
It was the lymphedema that caused me the most discomfort at of my job. I worked at a community college for 20 years. I often had to walk briskly across the campus from building to building in between classes with a time limit of 10 minutes. By the time I arrived to each class my feet and calf was had increased in size exponentially it seemed.. On the days I could sit in the classroom I could manage to make it through the class without being distracted due to the discomfort in my feet and legs.
A colleague suggested that I go see a Vascular Surgeon which I did. It was then I was diagnosed with primary lymphedema. I was told that there was no cure. I was never informed about any kind of possible therapy options. I got a prescription for compression boots where I had to sit three hours a day and out on these boots as they squeezed my feet and legs. Initially this treatment worked and I was pleased but the positive results did not last long.
Some years later I had a total left hip replacement and after that surgery my feet and legs exploded with edema. It was extremely uncomfortable. A side effect of the surgery called drop foot caused me to have neuropathy in my left foot and leg and the edema was down right painful.
I knew I needed to find some kind of treatment and heard about a Lymphedema Clinic at the Virtua in Motion Rehabilitation Center in Voorhess, NJ, where I made an appointment. There I met my first lymphedema therapist was wonderful. She did a series of massages on different lymph node points on my body and then she proceeded to wrap my calves and feet in foam and bandages. This was often difficult when she wrapped my left leg due to the neuropathy.
The dilemma I faced was when my extensive and grueling therapy ended I did not receive the proper supplies I needed in order to maintain what was achieved in therapy. I was very distraught about the concept of my condition regressing which is exactly what happened
A dear friend, Mary Anne, told me about another lymphedema therapy opportunity through Pennsylvania Hospital at the Penn Therapy and Fitness Center in Cherry Hill, NJ. It was minutes to my new apartment. I was thrilled. This is where I met Rebecca Golden, my present therapist. The philosophy of therapy was very different that Rebecca presented at my initial consultation. Rebecca would not start therapy until I considered how I would maintain it. Rebecca explained that I would need custom garments due to the shape of my feet and ankles. After discussing the price of garments, I left there feeling dejected but determined.
I went straight home and did research and on a website I found information about the Marilyn Westbrook fund. I went back to see Rebecca and we commenced doing the same message and similar wrapping methods as I had done my fist round in therapy.
When therapy came to an end, Rebecca and I discussed all the options as to which garment would be the best to control my lymphedema and manage my progress. We decided on the night time garment sold by the company Circaid. I was on Medicare and had a limited income. I was approved after applying for a grant from the Marilyn Westbrook fund.
I was so grateful to have my “boots” from Circaid. I initially had been concerned that with my other physical challenges I would have a difficult time putting them on. This was not the case. I wore my garments every night and sometimes during the day as well. These garments delivered what the company promised. My feet and legs maintained the fluid loss I received in therapy with Rebecca.
This past year I was in therapy again with Rebecca for a brief time. Not having the proper garments for the day time had caused my lower extremities to swell again. Once again I applied for a grant from the Marilyn Westbrook fund for day garments that would accompany my night-time garments. We decided to stay with the company Circaid and go with a day/night garment called Juxta-fit. The combination of the two garments is amazing. No pain, discomfort and very little swelling since I left therapy three months ago.
I feel like a different person. I am so grateful to my Lymphedema Therapist, Rebecca Golden, for her exceptional skill, compassion and support. I am equally as grateful to the contributors of the Marilyn Westbrook fund for their financial support which has allowed me to reclaim my independence and sense of well being.