Irene’s Story

Hello my name is Irene and im delighted to share my story. I developed spider veins at the age of 15 and varicose veins a few years after that. Anyway I remember summer of 2001 I woke up and noticed my left ankle was slightly swollen but no pain. I was baffled so when I had a doctors appointment he saw and said its just me. I didn’t know anything about Lymphatic disease at that time. As the years went by my legs were getting bigger and when I got pregnant in 2003,i noticed my veins were bulging and my legs felt heavy like I was carrying barrels of water. After I gave birth to my son my legs were huge. Anyway I had 2 phlebectomy procedures but no information was given about lymphedema and I think that vascular surgeons would give you some insight on lymphatic diseases because of venous insufficiency. Around 4 years ago I bought what’s called a Fasciablaster to decrease the appearance of cellulite. I posted a picture of my legs on the Fasciablaster support group on Facebook and I women noticed my legs and said the cuff on your ankle and the fat deposits on my legs looked like I have LIPEDEMA. I immediately started researching it and I went to my vascular doctor and I told him I think I have a condition called LIPEDEMA, he said you mean Lymphedema? I said no Lipedema so he said he never heard of it and there was nothing wrong with my legs except that I had to diet and lose weight. I balled out crying and ran out the office. I got an email from the Lipedema society with the name of doctor in NY who diagnoses women with Lymphatic diseases. So I called and I made an appointment, (she is also my PCP now) and when she saw my legs she said immediately you have stage 2 lipedema. I was relieved but sad like how come all these years no doctor was able to see that there was something not right with my lymphatic system . Its a shame that it goes undiagnosed and that its so understudied . Anyway she gave me a script for compressions and I started wearing compressions. I wanted to start MLD but couldn’t afford it until a few months ago found a lymph therapist that took my insurance so I went to see her for my evaluation and was told I have signs of LYMPHEDEMA too. It made sense because of the left ankle being bigger than the right. I learned a lot about lymphatic disease with my therapist. She is very special to me because she pushes and encourages me. The problem is I cannot afford compressions garments, pumps etc. I work 2 jobs seven days a week and literally living paycheck to paycheck to pay bills,rent and necessities for my son. I’m learning the most out of this disease and I’m not gonna let this consume me but it does affect me mentally, physically and now financially. My name is Irene and I have LIPOLYMPHEDEMA