MY STORY

In June of 2001, I met my best friend. She was small, practically pocket-sized, and kinda wrinkly. The first time I looked at her I was in love. She was already pretty spoiled when I met her; she’d had her own built-in swimming pool for months, music piped in daily with her very own soloist to accompany, and more sushi than she could eat.

At 8 months, something went wrong with her swimming area. The pool flooded so, with a little help, she was brought into the world one month early. Bright and beautiful. What we didn’t know then was that my lymphatic system had shut down.

In 2006, five years after my daughter was born, I found myself sitting in a salon in a barber’s chair talking to one of my then-clients. I think hairdressers and bartenders must be kindred, it always seems so easy to talk to them. On this particular day, the subject of the swelling in my legs came up.

“You have Lymphedema.”

He did the one thing all of the doctors hadn’t: He listened and observed. One of his customers was an LMT who specialized in Lymphedema. He referred me to her, but I went to Shands first for confirmation since they were who my wellness exams had been through during my pregnancy outside of my midwife. They confirmed that, yes, I had Lymphedema. They wanted me in immediately for therapy two hours a day, seven days a week, but we weren’t in a position to a) afford the gas at an hour-and-a-half away, and b) I had a little girl that I couldn’t afford to drag around like that. I requested a referral to someone who was local and, ironically, they sent me back to the same person my client had sent me to. I’d spent five years of my life going to doctor after doctor. Homeopathic, Ayurvedic, traditional. All of them taking one look at me, deciding I was fat, and prescribing enough medication to choke a horse. Pills, drops, Lasix, Potassium. Exercise, exercise, exercise. One in Gainesville even put me on 80mg of Prednisone for five days, which is another story altogether. Needless to say, damage done.

By the time I found out what I had, I had pooled over 110 pounds of fluid.

I truly believe that everything happens for a reason. There are no coincidences. People are put in your path who are meant to be there, for however long, exactly at the right time. It is always all about connections. (Remember that, there will be a quiz later.)

With no insurance, I was limited to three times a week but those were God-sent days. She taught me what to do, how and when to do it. She taught me to wrap, and even taught Val how to do a basic form of the massage. Then the money ran out, those helping me had strapped themselves and I had to stop going to therapy. I felt I was ready, though, I was excited. After so many years of not knowing what was wrong, I felt I was up for the challenge. Freshly garnered hope in hand, I gathered my notes and steeled my will.

I wasn’t prepared for the depression.

With 100 pounds of fluid trapped in your body, everything is uncomfortable. Your legs are wide so you can’t judge distance very well and your balance is affected. Your nerve endings don’t work very well, so you won’t always feel injuries making your risk of infection double. It makes you a bit paranoid. And heat is not your friend. Living in Florida makes the latter problematic. I was adjusting to motherhood and a complete change in the way I lived on a daily basis. I went from teaching Ballroom, Latin, and bellydance to no exercise. I thought I was going to go stir crazy. I shut down.

I cannot exercise without compression so there was weight on top of that. Compression involves wrapping my legs, mummy-like, in several layers of compression foam (4, 8ft long) and short stretch bandages (4-5, 10ft long) plus gauze and other pieces of black foam for ‘molding’. Wrapping on your own, if you haven’t had therapy and a support system, can be debilitating.

By the time I was done with one leg, I was exhausted on all levels and had to rest. Second leg done. Twenty minutes to half an hour go by and the bandages are loose enough to slide off like a sock. So it is unwrap, reroll, rewrap. Lather, rinse, repeat. And I had to wear them 24/7 until I could compress down enough to occasionally wear compression stockings; which have to be replaced every six months.

After going through a severe depression for several months, I made the decision to stop wrapping. My daughter, in my mind, had become my only reason to get out of bed. I threw myself into my art, started a charity group, went public with my writer’s group, and moved forward. I dealt with the stares because of my size and the condition of my legs. I didn’t like what I saw on the outside. I needed to start back to therapy, but have no insurance and most would not cover what is considered alternative therapy despite its successes. My life was full of blessings, but I worried about leaving my daughter behind and wanted better for myself.

In the end, having my daughter has changed my life considerably but, discomfort and pain included, I would do it all over again to bring my best friend into this world. I feel like I’ve waited my whole life for her. The only thing I would change is find a medical professional who knew what they were talking about. That is why awareness and education are so incredibly important.

 

 

3 thoughts on “MY STORY

  1. This is a reincarnation of my original “In Retrospect” post. I found myself sending the link out so much to people that I decided to give it a page. As always, thank you for being here and for giving me a reason to share this. xxoo

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  3. I can identify with so very much of your story. I wasn’t diagnosed until some 9+ years after everything started. Like you, I had no insurance. Fortunately one of the hospitals local to me offers charity care, for which I qualified. Fast forward to today. I was Dx’d with depression 12 years ago. Now I am virtually house-bound, due to knees that need a replacement and living on the 2nd floor. I wish there were LMTs that did home visits. . .

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