Revelations.

2013-07-28 14.21.09I received a phone call a few nights ago from Edely Wallace of Lymphatic Yoga Expert in Orlando. Her assistant had called me a few hours before to see what time would be good, so I knew it was coming. It was the most wonderfully empowering 36 minutes of my life. Based on my history, Edely confirmed a lot of my research and gave me a lot of new information that I’m really excited about. She would like to meet me in person to further assess my situation and to teach me specific exercises for each limb. Two things I hadn’t known, though, were…

  • Never wrap all four limbs at the same time. Do two at a time. Legs one time, arms another. If you were to wrap/compress all four, it would overload your heart. Not good.
  • I may be systemic, but there is no such thing as “completely blocked”. Fabulous news considering I was told I was completely blocked. If your lymphatic system were completely blocked, you would be dead within 24 hours.

I mentioned the conversation I’d had with my gastroenterologist recently. My theory was that the lymph nodes in the upper portion of my abdominal area could be putting pressure on my diaphragm, in turn causing the hiatal hernia issues. Edely said that LE is a degenerative, progressive condition that will affect every part of my body, all of my internal organs. Left unchecked and untreated, it can cause permanent damage or even be fatal. The best part of the conversation with Edely was being told that there was no reason why I couldn’t treat and maintain my LE. Myself. At home. For someone who has been on disability since the first of the year, yet unable to get into therapy, this is incredibly wonderful news. She urged me to do diaphragmatic breathing three times a day for 20 minutes, elevate and massage my legs, and do the neck exercises she outlines on her site.

I’m looking forward to learning more and sharing it. There is one thing I just have to keep remembering:
LE is part of my journey, but it is not who I am.

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!

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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