Healing my Lymphedema: part 3

Healing my lymphedema(1)See part one and part two for the backstory on my leg lymphedema. "When I taste your goodness, I shall not want."

Audrey Assad sings those words here, her voice softly yearning, her cry for God to deliver her from so many things all at once: the fear of being lonely; the fear of humility; the fear of death and dying. It is Psalm 23 all wrapped up in poetry and prose and lyrical music. It so elegantly describes the emotional and spiritual place my lymphedema has led me through—the place it is leading me through.

Going to the University of Michigan was not just an exercise in hope for me, it was an exercise in reversal. Having had lymphedema in my foot and then leg for 42 years has prepared me for disappointment and struggle. Disappointment that no insurance company seems eager to treat my leg; frustration that therapies used are often harmful to those with lymphedema; resignation that I will live with the way things are. 

Until things aren't that way anymore. Through a wonderful turn of events, as described in post two, I found myself in three weeks of intensive physical/occupational therapy with an amazing therapist and a new machine I could literally feel working on my leg.

Here are the therapies:

  • Manual Lymphatic Drainage. This is standard at most hospitals/treatment centers, and I have had it done several times before. It involves a massage drainage and wrapping your leg in bandages. It is always helpful, but it doesn't break up fibrosis accumulated when a patient has had lymphedema for a long time.
  • Thor Laser. This is a newer tool, a cold laser, that offers a stronger and larger area of treatment than a handheld laser. It takes awhile to work, but it does seem to help some patients break up fibrosis—and it can even contribute to lymphangiogenesis, the process that stimulates new cells to work, improving lymphedema. A good adjunct treatment to MLD.
  • PhysioTouch. This machine is where the magic happens. It comes from Finland, and it is a suction cup sort of device with a # of different sized suction cups a therapist can use in different spots, distributing negative pressure. When used on my leg, it would pull up and I could feel the lymphatics release. Wow. I attribute most all of the softening and breaking up of fibrosis in my leg to this wonder.
  • Kinesio taping. This is sports tape cut to open up lymphatic channels, lifting fluid to move out, and I must admit, it also works. Particularly useful for me in taping it in areas where I don't have lymphedema to keep the fluid moving up and out.
  • Inflamzyme Forte enzymes. I got this trick from a holistic lymphedema therapist in North Carolina. The digestive enzymes work to begin to soften fibrosis as well, and they keep your digestive system working swimmingly. Finished an entire bottle while in therapy.
  • Exercise. Firstly, a lot of deep breathing while pushing on the abdomen is essential. This is the only pump in your whole body for lymphatic fluid. I could feel it moving when I did so, also helping to bring the fluid up and out of my leg. I also did a series of exercises while lying on a bed in bandages. I did water exercise 4-5 times; this is hands-down the best exercise for lymphedema. While bandaged, I also did short times on a stationary bike almost daily. (Lastly, while at home I use a chi machine for 15-20 minutes in the morning. It jumpstarts my lymph system, relaxes the spine, and generally makes me feel wonderful.)

As you can see, we were quite thorough. Although I still have some fibrosis in my lower leg, it is clearly diminished and things are working much better. If I kept going with the PhysioTouch/MLD, I'd probably get rid of all of it, but I'd still have lymphedema and need to wear a compression stocking.

For all of these gifts, I've been saying: thank you, thank you, thank you. One of my intentions for this year was to make a daily decision to embrace hope and joy. This therapy ushered me into 2015 with a smile. It was challenging, upending, and filled with moments of beauty.

For three weeks I lived in a home near the hospital filled with U of M patients and families. A pregnant mother under careful watch. A dear woman whose husband waits for a lung transplant. A man walking around with a new pancreas and kidney and a new lease on life. Two men undergoing cancer treatments, living in the tension between uncertainty and hope.

And while I sat among them, witnessing both their sorrow and their joy, I was reminded: each breath is a gift. Each embrace by friends and family a treasure. Each new morning designed for embracing, no matter the circumstance, no matter the pain or struggle.

We are to look for the joy, and somehow, amidst everything, God has designed us to find it. 

The Lord is my shepherd, I won't be wanting. Not when I find my contentment and satisfaction in the right place. May it be so—for me, and for you.

May our heavenly Father, our Abba-daddy who loves us so, surprise you with joy this day. And the day after that, too.

Your turn: Have you hoped for healing in some way that took years or decades? How did you change as a result?

On the book #ReclaimingEve: “I recommend this resource for every daughter of Eve!”
— Nancy Beach, leadership coach, speaker; author, Gifted to Lead: The Art of Leading as a Woman in the Church
Reclaiming Eve Small Group DVD sample here. Includes print Bible study piece. Order here.

Healing my Lymphedema: part 2

Healing my lymphedema2See part one for the backstory on my leg lymphedema. "Did you just do that today?"

A woman passed me last week as I was getting ready to exit the University of Michigan hospital where I am currently in the middle of three weeks of lymphedema therapy. She was staring at my leg, which was wrapped in layers of foam and bandages, toes sticking out of an ugly black boot.

"Uh, no," was all I could manage to utter. I didn't want to go into the details of being born with a swollen right foot. When I posted a picture of my wrapped leg to facebook, friends came up with some wicked stories for me:

  • "While I was holding a run-a-way car back with my foot to keep it from running over an infant, it shattered in several places." (Jill, the heroine angle)
  • "Tackled David (my husband) like an ezer-ninja!" (Jocelyn, the theology, "ezer"/strong power angle, see Genesis 2:18)
  • "You were leaping over a tall building in a single bound but didn't stick the landing." (Kelly)
  • "It's a limb transplant. All they had available was Andre the Giant's calf." (Tim)

Humor heals, and for this I am grateful. All my life we have fought for insurance to cover therapy for my leg. My mom did so even when no good therapy was available. My parents even gave up their dream of going to the mission field so they might stay in a cooler climate for the sake of my leg. Some of the treatments were actually harmful, and my current therapist shakes her head when I tell her the stories. We did the best we could, and I'm so grateful for the abundant life I've led.

Last August, the impossible seemed to have happened. I found the laser treatment I've waited 15 years to receive was available at U of M hospital. The therapy was scheduled, and I was two days from leaving, when the inevitable happened. The insurance denied the therapy. The reason was a technicality, as it always is. It made no sense. Lymphedema patients are rarely given the resources to help their condition without significant hassle, especially if they are born with the condition. Breast cancer arm patients have better success, though it is still challenging. My occupational therapist actually sees less patients than a normal physical therapist would because of the extra work and paperwork required to convince people lymphedema treatment is needed.

So then a small miracle happened. Even though the insurance said they would not cover my treatment because it is "primary" lymphedema, and I was "born with it," rather than being caused by an accident or surgery, things soon took a dramatic turnaround. A group of doctors at U of M spontaneously met in a coding committee, and after 42 years, changed my diagnosis. I was no longer a primary lymphedema patient, but a secondary/other lymphedema patient, and so the treatment was 100% covered. Unbelievable.

I was reeling. It is true that none of my family members have lymphedema, so it doesn't appear to be congenital. And even if it was, it is also true that every diagnostic test showed no problem with my lymph system or any other system in my body. The nearest any of us has been able to tell, something may have happened to me in utero that crimped off my circulation; even then, we don't know why it didn't resolve itself.

I am a girl with a new diagnosis. And after all these years, something amazing is happening. The little pockets of swelling in my ankle are giving way. All of those times I was told "there's nothing you can do, just live with it" are ringing in my ears now. Because something is actually being done. It is slow, intense work since I've had my condition for awhile, but we are trying everything we know to break things up and detoxify my body, and I feel and see it working.

Spiritually, though, even greater healing is happening, as I realize a few things about provision and how God's timing so often differs from my own. Had I come last August, the "physiotouch," which is a machine I didn't even know existed, would not have been available yet. It is the physiotouch more than the laser that makes immediate improvements to my leg. What I also didn't realize at the time is that my housing would not have included air conditioning, and August would have been a trying time to work on reducing leg swelling with the heat and humidity. There are many other things that are lining up for me here like a beautiful set of dominoes: healing follows healing, provision follows provision, kindness follows kindness.

I am learning to trust that God is making a way for me even when I go for decades without knowing how that way will be made. Thank you for joining in this grand adventure. I'll be back to conclude next week with final thoughts and a list of the therapies we're using that in our healing mix.

Your turn: Have you hoped for healing in some way that took years or decades? How did you change as a result?

On the book #ReclaimingEve: “I recommend this resource for every daughter of Eve!”
— Nancy Beach, leadership coach, speaker; author, Gifted to Lead: The Art of Leading as a Woman in the Church
Reclaiming Eve Small Group DVD sample here. Includes print Bible study piece. Order here.