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.

The greater the risk.

Life is inherently risky. There is only one big risk you should avoid at all costs, and that is the risk of doing nothing. – Denis Waitley

With our trip to Europe less than three months away, I have been reading up on LE and the risks associated with flying. With any trip that requires you to sit for long periods of time, there are always risks. You cannot live in a cage though; you might be safe from harm, but you are safe from all the wonders of the world too.

Like a Sardine

My hope had been to be in therapy long enough before our trip to get some of the fluid off, as well as some of the weight, so that I could be comfortable on the flight over. As we are flying on airlines I’ve never been on before, I can only hope they are more spacious than my previous knee-eating, butt-squeezing experiences with United.

My trip to Maryland recently had me crammed into a space my child would have been cozily nested into, so the trip back I bit the bullet and spent the extra 37 dollars to upgrade to Economy Plus. I lucked out behind a bulkhead with enough room to not only stretch my legs, but store three suitcases and a sherpa. However, my butt barely fit in the way-too-narrow seat, so I had to keep my legs moving in order to fight off the lack of circulation from being severely pinched at the hip. Whoever designed those seats got it backwards.

Keep It Moving

Cabin pressure, lack of circulation, blood clots – all of these things require caution and preparation.

Oddly enough, I learned that cabin pressure is actually weaker than normal air pressure, hence why your ears pop during take off. I probably knew that somewhere along the line, but it isn’t something I normally think of, so I’d gone with the falsehood that pressure increased to maintain things. Nope.

So if the cabin pressure is less than when on the ground, being compressed when you fly is always recommended. Possibly even wearing bandages over compression stockings. Also, keep an eye on leg pain. Though it can happen anywhere in the body, if you take long flights especially and your legs are hurting, don’t ignore it. It could be an early sign that you have a blood clot aka deep vein thrombosis (DVT). As always, watch for swelling and redness. If the area is carrying heat, get to a doctor. Now.

There are several things you can do to fend off problems while traveling:

  • Avoid alcohol and salty foods. Resist the midges. While fun and oh so tempting, they won’t help your lymphedema. Darn it. You could also take tea bags and ask for hot water.
  • That said, drink plenty of water.
  • Wear loose, comfortable clothing. Compression is for bandages, not clothing.
  • Move around the cabin frequently and keep your limbs moving when you have to be seated. As air travel is sedentary, your circulation needs a little help. Slap on some tunes, Zumba!
  • Bring lotion. Cabin-pressured air is usually very dry. My favorite, out of everything I have tried over the years, remains Aveeno Baby.
  • Sit in a bulkhead or first class seat if possible. Your legs need room, even if your legs aren’t what is affected. There are huge clusters of lymph nodes in your pelvic and groin area, so don’t neglect those areas. Trust me, paying a little bit more is well-worth it (unless you are on United).
  • Wheels are your friend. No carrying heavy bags! You damage your skin and pinch off nerves and muscles with heavy bags strapped all over you. Two wheels are great, FOUR wheel “spinners” are fabulous.

Onward and Upward

I know that I haven’t covered everything, but this is a good start. If you travel a lot and have any tips for flying or traveling in general, please feel free to post them below. I’m looking forward to seeing what you have to say!

_________________

Additional resources:

http://www.lymphnet.org/pdfDocs/nlnairtravel.pdf (links directly to a PDF)

http://www.lymphnet.org/lymphedemaFAQs/riskReduction/travelTips.htm

http://www.lymphnotes.com/article.php/id/33/

http://www.hematology.org/Patients/Blood-Disorders/Blood-Clots/5233.aspx

Angel.

Oddly enough, I had started writing a post earlier today about how things were going here lately – getting off track, getting back on track, rearranging my workspace to accommodate my health – but it all seems pretty trivial right now. I just got a phone call from a friend.

We lost an angel here today.

Eternal rest grant unto her, O Lord, and let perpetual light shine upon her. May the souls of the faithful departed, through the mercy of God, rest in peace. Amen.

My friend Rose lost her battle with cancer today. She was. is. an amazing woman. I have no doubt she was in Heaven on the exhale and has spent the day up there rearranging the furniture in the lobby for St. Peter. Rose inspired so many people during her time here, and continues to. Her and her husband Chuck both. Rose was a powerhouse and I have no doubt she still is.

The reason I say here is that I know she is at peace with God now. She isn’t gone. She’s watching over everyone she loved and I know that her kind of love easily spans the distance from there to here and back. I feel blessed to have had the time with her that I did, her impact in my life far-reaching. Rose was the one who helped me get back into lymphatic therapy, however brief, and set my mind on a different path. She made amazing Hootycreek cookies (which she got me hooked on, thanks) and could sideswipe you at cards with an impish chuckle before you knew what hit you. Her smile spoke a feisty passion for life that was infectious and I loved seeing it. I’ll miss it.

My husband Val, my daughter, and I have some very fond memories of her, and I know she won’t be forgotten. Far from it.

Ironically, today is International Women’s Day. I love you Rose. Yes, I know, I’ll go wrap.

Bouncing back.

We all had a run at the stomach flu recently that was going around, my daughter came in first place with a hospital visit and eight hours of vomiting. Having fallen off the truck, I haven’t wrapped in almost two weeks. I have been so wiped, I haven’t had the energy to do it, and I have been so busy that I haven’t been able to get off my legs long enough to get them down for wrapping.

So, in honor of my need to get back on track, today is “Stay Off Your Legs and Barricade Yourself in Your House Day”. I think we all need one of those occasionally, especially moms. The key is no guilt.

Past is, well, past. Holding guilt in your body over something that has already happened serves nothing but to make you ill. It’s done. You can’t change it. Better to focus on what you can do and pour your energy and self into that. Let yourself off the hook and keep moving forward.

image

New inspirations.

For now, I am dreaming of breakfast in bed and a morning of looking at art magazines while my legs are up. I’l tackle the rest of the world, and my legs, a little later and move forward.

Hang in there!

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.

Courage.

The past two weeks have been the most hopeful in longer than I can remember. I started back to therapy through the kindness of, then, strangers and was asked to be a speaker for the launch of a new health group.

And I lost 14cm off my left leg.

Courage.

I have been debating about blogging my health for a while now. I attempted a SparkPeople page but, while a great resource, the site is geared more toward weight loss and I didn’t feel like I fit in there. Weight loss would certainly help my overall well-being, especially since my Type 2 Diabetes diagnosis, but my condition didn’t allow me to exercise without compression > which required therapy > which I didn’t have. I wasn’t holding back out of a lack of courage (well maybe a little) but I felt that I didn’t have anything positive to share with anyone.

Depression had been a normal part of my life for so long and in such subtle ways that most people didn’t even realize I was depressed. I knew that I was depressed, I’d always known, and that helped me cope with it. Anytime I wanted to just dive in and put it out into the world, though, it felt fake and I have never been wired like that. I pride myself in being straight up with people, and very much expect the same, so I couldn’t bring myself to pep talk anyone else when I was needing it more.

A great deal has changed since last year and in the last two weeks. I have my life back, along with all my newfound joys, and I feel more like myself again. Finding a support group of beautiful, empowered, incredibly stubborn women made all the difference.