A Need for Education

Photo Credit: odin's_raven via Compfight cc

Photo Credit: odin’s_raven via Compfight cc

Blogging has never been one of my strong points, something I am hoping to change as I push myself harder this year. It has been a long time, way too long, since I posted last. So I thought I would pop in and share some things with you.

THE GROWING LIST

I posted last year about my out-of-the-blue Hiatal Hernia attack that threw me for a loop. Being ill isn’t new to me, but I usually have some type of warning. Getting sideswiped brought about new contacts and information, but also made me increasingly aware of the deficit of information out there about LE. At least in the United States.

A NEED FOR MORE EDUCATION

My last run in with my Gastroenterologist left a lot to be desired. According to him, Gastric Bypass was the solution for everything: Your nose is running, Gastric Bypass. Your ear falls off, Gastric Bypass. You have a cowlick, Gastric Bypass. ANd, keep in mind, this is also the same man who told me he knew nothing about the lymphatic system, yet still wanted to crack me open. In fact, what topped it, was when he told me, and I quote…

“(scoff) You won’t find a vascular man that knows anything about the lymphatic system. (laugh)”

Wow. Really?

If that’s true, the entire medical profession needs to go back to school. That’s like saying blood has nothing to do with the cardiopulmonary system. The Lymphatic System is called “our 2nd circulatory system” for a reason. It’s important.

I remember I just stood there and stared at him in disbelief a moment before hemming in my anger and saying something to him along the lines of “the lymphatic system affects every system in the body, every”. Of course, the rest of what I was thinking isn’t something I’ll repeat here. He just smiled and then his nurse proceeded to tell me that looking things up on WebMD online isn’t reliable. When I told her I read actual medical journals and spoke to therapists in the field she just walked away. I’m not medically trained, therefore, I know nothing.

I’m not medically trained, but I read and I absorb. I have been living in this body all my life, know it’s ins and outs (no pun intended), and have been studying since the moment I finally found out what was wrong. Five years worth of “your fat, you need to exercise, here’s some water pills” failed me (and almost killed me) until someone who paid attention referred me to my first therapist. I think to deal with something like this and not dig your heels into the research is counterproductive to living and, dammit, I really want to live.

After that last meeting with my (now ex) GI, I realized it is that kind of haughty ignorance that makes me the most furious. It’s scary. We rely on physicians to be knowledgeable, to know as much about how our frail, human bodies work as they do the apps on their smartphone, and yet, well, they don’t. The medical industry in the United States, and that is what it is never forget, an industry, is broken and our physicians need to stop resting on their laurels. They need to be required to take workshops on anything related to their field.

I have come to learn several things over the years, but one stands out: The traditional medical industry condemns alternative medicine because, for one reason, they can’t make money off of it.

This isn’t true for all fields of medicine, it just seems prevalent in the United States. Some physicians have actually, happily, embraced the value of alternate therapies and I love them for it. Their lives and the lives of their patients are not made easy by the rest of the system, though, and there’s something wrong with that.

The biggest focus should be on continuing education. Working together, collaborating and consulting with other physicians in other areas of expertise should be the norm. Specializing in a particular medical field should not negate the fact that you need to learn about other systems, they are all connected.

Hope.

I am very blessed to have the support group that I have. To know, when I wake in the morning, that I have people around me that love and care for me, is a tremendous gift. I haven’t always had that and I wonder how those tho deal with LE on a daily basis cope without one. My husband, Val, and my daughter Ysa make for an incredible pep squad and I could not get through the daily part of things without them. In the last month, I have I have both started and stopped therapy, lost 33 pounds, and have become more self-reliant with my therapy. The therapist that I had briefly helped me to slowly regain my footing, allowing me to get my head back in a place where it needed to be.

Having and then losing therapy due to finances five years ago was devastating to me on every level. I knew that starting over was going to be tough and that I was at a place where I was going to have to have therapy (MLD) before I could do it myself. My disability case is on hold till I could get on a judge’s docket, possibly till December, and I couldn’t wait. I was led through two different people to someone who offered MLD and CDT, and the next few weeks were wonderful. It was only for three weeks, but it had served its purpose and losing therapy was a good thing. I needed to be more self-reliant in my therapy and no one could wrap as well as I could wrap myself, a lesson learned from my original therapist years ago.

I knew it wouldn’t be an overnight thing, but the strides that have made have been incredible. I have cleared my plate, removing potentially stressful things from my life, and I am focusing on Art for Cures and my own projects for a change. I have been able to face my fears and turn my head around regarding therapy and what I needed to do.

There are always going to be days where I don’t want to wrap, where I am so exhausted from living my life that all I want to do is sleep and avoid it, where I get frustrated by the inconvenience of having to schedule my life around my legs. But there are also days where I remember that my daughter and husband can wrap their arms around me now, where it isn’t a strain to pull my leg into the car or walk with sandbags around my ankles, where I remember that I won’t always be like this if I work at it and where I am full of energy and hope.

It is hard, daily work, but the benefits far outweigh it all. It goes beyond portion control, wrapping, rewrapping, and laundering bandages. It is about hope, health, and becoming who you are inside. It is a growth process on all levels and I am happy to be back amongst the living.

In retrospect.

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, Brian Kuhn at Evolutions. 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.”

Brian did the one thing all of the doctors hadn’t: He listened and observed. One of Brian’s 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 Brian 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 100 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.