Learning to Live with Lymphedema

LymphedivablogWhen the title of this Blog Post entered your Inbox, let’s face it, your heart did not go pitter patter with excitement.  Please try to stick it out!!!  You will learn something and I will attempt to give you a few laughs along the way!   You and your Lymphatic System have something in common–   misunderstood and under appreciated. There are 500 to 700 lymph nodes in the body. Who would think if you have one or a few of those removed, in my case 14, it could cause so much trouble?

My Lymphedema was under control until I picked up those 3 plastic bags of groceries with my impacted arm and then my POOF of Lymphedema came back with a vengeance. Now you cannot yell at me because admit it, you have done it and later regretted it even if you have no chance of Lymphedema.  Who wants to make 3 trips from the trunk of the car if you can do it in only 1 trip. And, of course, I had about 50 pounds of items in those 3 sacks because I tell the checkout girl, “put all you can in one bag.” I HATE IT when they put a box of jello in one bag, a bunch of bananas in the next, and on and on until you have about 20 bags with nothing in them, and you get home and you wonder how you can make plastic monkeys for the kids out of all these bags you have sticking out under your sink.  Then the environmental guilt hits you, and it is a downward spiral from there.

Starting with that one mindless “carry the heavy groceries all at once” moment, my arm started swelling up, and then my hand, and then my fingers until it was larger than it had ever been. It really scared the you know what out of me. Suddenly, all I could remember was the only woman I knew who had a Mastectomy when I was a child. She had one huge arm and one smaller arm, and she always wore sleeveless tops. Suddenly, I felt great compassion for that woman.

Yolanda is an inspirational Stage 4 breast cancer survivor from my internet support group. She and I were discussing Lymphedema and our latest flare ups. Very reluctantly, Yolanda and I are realizing that we are dealing with a chronic condition that changes our lives forever.  It is just now dawning on us how much daily time and attention Lymphedema requires.

My Lymphedema first showed itself during Radiation treatment which is common. The lymphatic system is compromised because the onslaught of radiation overwhelms the system. An occurrence can happen  20 years or more after surgery!  Lymphedema may not be present and then one wrong move and PRESTO!

For those of us at risk for Lymphedema things that cause flare ups in addition to heavy lifting is anything that  requires repetitive motion like shoveling snow, sweeping with a broom,  gardening, exercising, mopping, raking, any other kind of shoveling like dirt or digging,  vacuuming, typing on the computer, extreme heat or extreme cold, and injuries to the arm of any kind.     This is why you must wear a compression garment when doing those things.  Many women find it necessary to wear a compression sleeve every day.

YOU CANNOT HAVE any needles – blood tests, shots, or blood pressure taken in your arm at risk.  This is imperative!  I also heard from one woman who got Lymphedema after a manicure!  Even insect bites can flare up Lymphedema!

When flying in an airplane it is ABSOLUTELY NECESSARY that you wear a compression sleeve or wrapping if taught to you by a Lymphedema Specialist. One of my radiation nurses was a 20 year breast cancer survivor.  After 20 years, she figured the risk of Lymphedema was over, so she took a short 1.5 hour flight without a compression sleeve. When she landed her arm was 3 times its size and she has had to deal with Lymphedema ever since.  Another gal I met at my Oncologist’s office had the very same experience 3 years after cancer treatment – one flight without compression and bam!

All of this sounds rather ridiculous, doesn’t it?  I mean, come on, sweeping your front porch and suddenly your arm swells up for the rest of your life?  This all seemed outrageous to me too, even though I have been to two classes outlining the potential horrors.  I had to test it all out to see if  the crazy person who made up these rules was right! I hate stupid rules!   Well, guess what?  Whoever “they” is, was right.  I had to learn the hard way that it is necessary to follow the Lymphedema Rules.  UGH!

And if your closest and dedicated friends and family still ask, “How are you feeling?” they sure don’t want to hear about Lymphedema.  During your fight for life during cancer they sent you the cards, baked you the muffins, visited you,  took you to Chemo, bought you the gifts and listened to your complaints. My friend, Anita, even attended a Lymphedema Class with me!  Talk about above and beyond!  But, let’s face it, hearing about Lymphedema is about as exciting to them as I used to get when my grandfather would start talking about GOUT, and before I had a chance to yell, “No, Papa, don’t do it!” he was taking his sock off and showing me his big, swollen red toe!

This breast pillow/seat belt cover for the car has helped me so much.  I have it for sale in my online store for $19.90 with free shipping.  The compression of the seat belt caused flare ups in my Lymphedema – this helps!  Click on image!



I am so fortunate to such a great Lymphedema Specialist, Mary Berg, with the Mercy Health System in Toledo, Ohio.   She has helped me so much with lymphatic massage, education, and the correct compression techniques for my hand, arm and trunk.  And oh yes, you can have Lymphedema on your body called Truncal Lymphedema which requires compression garments on your chest area.  More fun!  Mary knows who I am because she has had plenty of other patients just like me…non-compliant.  We don’t follow the rules and then come screaming and crying to Mary for HELP!!

If I would have had on my compression sleeve, I could have lifted those bags of groceries probably without incident. But I did not have it on because I was not expecting anything out of the ordinary (at least that is what I told Mary).  The sleeve pictured at the top is made by Lymphedivas.  Just so you know, the part that covers the hand is called a gauntlet.  They are certainly a lot cuter than plain and boring beige.  Lymphedema garments now take up a whole area of my closet.   I was recently fitted for a Juxtafit sleeve which velcros on rather quickly.  This is great to put on if you are going out to garden, going to exercise, or do anything that you need protection in a hurry.  The picture below is the Juxtafit and has to be measured by a professional.  I will admit, it is handy (no Lymphedema pun intended).  It isn’t my favorite thing to wear, I must admit.  It certainly is not every women’s idea of high fashion.  But it works!


Oh, one last very serious thing, Cellulitis — Cellulitis is a skin infection which can occur very easily with Lymphedema if you have an injury to your hand or arm. If untreated, Cellulitis can be deadly.  Even a small burn or cut can put you at risk. Therefore, as a precautionary measure, it is necessary to wear gloves while doing dishes and housework, yard work, or any heavy duty work that puts your hand/arm in danger. Insect bites can cause cellulitis so in warm months, it is important to wear insect repellant and sunscreen as even sunburn could cause cellulitis. I have to carry with me anti-bacteria gel and antibiotic lotion to apply immediately even if I get a paper cut or hangnail!  And at the first sign of any infection, I have orders to get to the hospital Emergency Room immediately.  And if you are traveling, in some cases it is  wise to have an antibiotic with you.    I don’t want to die of Cellulitis because I got a cut on my finger while peeling potatoes after I fought my way through to become a Breast Cancer Survivor.

If you are a Breast Cancer Patient or Survivor and have had even ONE LYMPH NODE REMOVED, get to a Lymphedema Class and find a Lymphedema Specialist immediately.   (update:  I have now heard from two women who have Lymphedema with no nodes removed!)   If your local hospital does not offer one, find a major breast cancer center which does.  It is worth the drive to find out the dangers and how Lymphedema can be avoided and treated.  It is absolutely IMPERATIVE that you learn about this chronic condition – how to prevent it, how to control it, and what to do if you already suffer from it.