3/11/23: Lymphedema — the New Adventure

Photo: These winter-blooming Hellebore flowers have nothing to do with this subject, but they are more photogenic than my new support hose.

The Usual Huge Disclaimer: Ask your medical care team. Don’t come to a Russian language major for your health information. This is basically a journal entry about the past couple of weeks, and is not meant to apply to anybody else.

Extra Disclaimer: Here’s a show tune I wrote to lighten the mood around this topic. I don’t own the rights to the copyrighted melody or the pastoral Rodgers and Hammerstein lyrics named after The Sooner State. That said, if you want to sing along to this, go right ahead.

Lyyyyymph / Edema

Diagnosis. What to do with that???

And initial fears

when all these years

here I thought my ankles are just fat.

Tweeeeenty / Thirty

is prescribed for these new pressure hose.

They’re the right tight sort

for vein support

Iffen I can pull them past my toes.

Driiiiink / your water

ease up flour and salty snacks and sweets.

Keep up active motion

Slap on lotion

Take some break time putting up our feets.

So here I’ve been hiking around for years on stout thick stiff ankles with chapped dry flaky reddened and often-itchy skin, and thought nothing of it. Windburn made it worse, and so did sunburn, freezing air, gluten binges, and picture-taking strolls in the cemetery and golf course with, just maybe, chemicals to keep those lawns green. I just slapped on coconut oil and resolved not to scratch, and went on with life. Finally I ended up in the ER with an ankle staph infection, apparently after some trivial unnoticed skin break. Ever since then, doctors have been asking questions and referring me hither and yon.

A wonderful vascular nurse determined that it’s lymphedema. She prescribed compression knee-high stockings that apply 20-30 mm of graduated pressure, tightest around the ankles, to wear during the day but not at night. Apparently they help keep the lymph from settling down in the lower legs. She instructed me to put them on first thing in the morning, before the legs start to swell up. She explained that we’ll have to reduce the mechanical swelling in order to let the skin heal. She recommended frequent changes of position and exercise breaks. She referred me for a vein valve leg scan in April. (If there are defective valves close to the skin, they might be able to fix them. If valves are defective but deeper, we’ll stick with compression stockings.) She also referred me to an occupational therapist.

The 20-30 mm stockings from the drugstore are like a circular-knit stack of firm rubber bands, tightest at the ankle. My arthritic hands couldn’t get them up over my bent bunion toes. Uh-oh. I asked Angelina, Power Nurse at Large, to help me. “Am I gonna have to come over to your house every morning at 6:00 a.m. so you can get me dressed?” I asked her with some anxiety. “Maybe,” she said, cheerfully giving it a try. She couldn’t pull the stockings over my bent toes either. Over the next few days I kept practicing stocking techniques, all of which left me in hand pain and close to tears. I was failing as a lymphedema patient!!

Luckily for me, the outstanding occupational therapist immediately calmed me right down off the ceiling with her reassuring and cheerful solutions.

First, she defused my panic by starring me in a fashion show of wrap-around and other support garments, plus hand-held gizmos for pulling them up easily. It was really reassuring and fun trying them all on. Then she gave me a wee thin floppy square of Dycem, a wonder substance which on hard floors provides a non-skid surface. (Wash it with a drop of soap and water, and dry it on a lint-free surface to keep up the non-skid tacky qualities.) She put the Dycem on the floor, and coached me to put my toes in the stocking and slide my foot toe-to-heel. To my delight, the stocking slid right on like magic! No strain on my hands! Next, she gave me garden gloves with grippy nitrile palms. The gloves gripped and smoothed the stockings right up to the knee!

She showed me an anatomical chart of the lymphatic system with its channels and nodes. Our lymphatic system carries and cleans away dead white cells, cancer cells, and waste products. When lymph slows down and backs up into the tissues, it separates the skin more from the muscle and circulation system; then the skin breaks down, loses lubrication, and become dry and thin and fragile. Lymph pressure pushes red blood cells out of the vessels and into the tissues of the lower leg, causing iron oxidation and a brick red skin color (it’s basically rust).

She taught me lymphatic drainage massage to do for 40 minutes every day. We can use diaphragmatic breathing as well as soft gentle directional strokes (“like you’re petting a cat”) to massage and stretch bare skin along lymph channels and nodes all over the body. Stroking the lymph layer upwards and clearing it on its way (starting at the top, and working our way down) will allow the circulation to start healing the skin.

She also explained that the ankle skin needs to be kept clean and hydrated, with water-based lotion. A lotion with water as the first ingredient also helps during the massage, to gently stretch the skin. We need to avoid any activity that causes reddened skin. When the skin is reddened by topical allergens or cold or heat (overuse of hot tubs or saunas), the body will rush liquid into those tissues. (I did ask her about my Wim Hof Method daily cold water wash. She thought this short dip in cold tap water sounded okay.)

She emphasized the need to avoid cuts and scratches, because lymph is so rich in protein; any bacteria entering stagnant lymph will feast on protein and multiply rapidly. If the ankle skin shows redness and swelling or a rash, infection might reach the bloodstream and require intravenous antibiotics. At any sign of infection, it’s time to head for Urgent Care or the ER for immediate treatment.

She also emphasized the importance of hydration, drinking enough water, and cutting way down or out on flour and sugar. She suggested that I photograph the ankles so that we could measure our progress before my followup session.

I asked her, “Could this influence our emotions? I have a literal sinking feeling, a deep discouragement that is very hard to forge through.” She said “Water is heavy. If you are carrying extra water in your legs, that can definitely add to a feeling of heaviness.”

I went home wearing my stockings, and practiced the massage and skin washing and lotion that evening. But if only I had taken that starter photo before the OT session. Next morning I took a look. Whoa, thin legs! What? Are those ankle bones? Where did they come from? Since then the ankles look slender, and the skin is much softer and hasn’t had a single itch flareup. Even foot circulation looks better, with a healthy rosy color and warm feel.

That day I bought nitrile gloves and three more spare pairs of 20-33 mm stockings. (I wash each pair after taking them off, and dry them, for a supply of fresh pairs each day.) Then I shopped from store to store looking for a water-based lotion with water, not oil, as the first ingredient, and with the fewest additives. The simplest formula was Trader Joe’s “Nourish” Hydrating Hyaluronic body gel cream in a pump bottle. The pump doesn’t work, so I have to drag lotion out of the bottle with the pump stick and slop it on the skin, but oh well.

The new routine is an extra 40 minutes in the morning. It’s Wim Hof breathing exercises and lymphatic drainage massage, then a cold water wash (cold tap water feels wonderful for leg circulation and mood), then drinking plenty of warm water, then lotion, then letting the lotion soak in, then with the Dycem as an aid sliding the stockings on for the day. At work it means frequent sitting and standing changes, and breaks in the conference room holding the legs up against the wall. At night it’s all the steps backwards — stockings off & washed, massage, washing, lotion, then earlier bedtime and sleeping with the feet elevated on a cushion.

That is a whole lot of privilege and pampering. During the daily routine I think sadly about the working women back in the Soviet Union, forging around on their feet all day long. Some had massive ankles with rolls of swelling and the skin weeping fluid right through their heavy stockings. And even here, how many single moms have time to fuss with doctors and self-care like this? What about the many people I pass all day, sleeping in their tents on the streets? When do they get clean lotioned skin and the right stockings and adequate diet and rest?

Well, if I neglect this condition, that will not make me more useful to society. This is my homework for now. Lymphedema is chronic and apparently permanent. It’s painless and subtle and gradual, and I wish that someone had diagnosed it for me years ago. Like other gradual conditions, it can coast along for decades. But it can also make us vulnerable to rapid complications such as skin staph and strep infections, cellulitis, strained vein valves, and stagnant circulation leading to blood clots and embolisms. Our task is to slow down that progression in the future.

Maybe someone will read this, and start to wonder about their own ankles. Do they look swollen, or feel stiff or itchy? Does the skin look red, or have cinnamon-colored dot points? Do even soft loose low socks leave red lines on the skin? A medical provider can do the thumbprint test, where they press in a thumb (ow!) and then gauge the depth of the print and how quickly it disappears. Those are all signs to ponder.

Live and learn! This whole adventure is food for thought, and a lot to be grateful for.

About maryangelis

Hello Readers! (= Здравствуйте, Читатели!) The writer lives in the Catholic and Orthodox faiths and the English and Russian languages, working in an archive by day and writing at night. Her walk in the world is normally one human being and one small detail after another. Then she goes home and types about it all until the soup is done.
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2 Responses to 3/11/23: Lymphedema — the New Adventure

  1. wendyrud says:

    Dang! Sorry you are having to deal with this, Mary. But sounds like you are doing a good job with it and it’s good you got a diagnosis—and huge shoutout to the therapist. I agree, we have a lot to be grateful for and imho we can pay it forward (which I know you do) by helping others and sharing our knowledge.
    Your writing always encourages me and gives me food for thought. And, of course, your humor—love your show tune 🙂
    Blessings and namaste,

    • maryangelis says:

      Show tunes, yay! I grew up with LPs on the turntable as a kid, and they were everywhere. That one wrote itself while I was boiling some dish towels, and hey why not get some fun out of it? Thank you so much for your dear kind words. If this helps anybody else, it is all worth it. Spring is almost here! Blessings, Mary

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