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.

Healing my Lymphedema: part 1

Healing my lymphedema-2One September 19, a little girl was born without fanfare in Chicago's Swedish Covenant Hospital. I was the first child born to my parents and the first grandchild for my maternal grandmother. Their joy, however, was tinged by a reality they must face.

suzanneDoctors huddled around the infant, their tongues buzzing, as they wondered aloud at why the child had two swollen feet. Even stranger, the swelling in the child's left foot seemed to be evaporating, while the right foot remained swollen. Their prognosis was dutifully delivered to the concerned parents: your child likely has Turner's Syndrome, meaning she would be mentally challenged, short of stature, and sterile. A nurse even mentioned to my parents that there are institutions to help care for children like me. They balked: God had given them this child, and they would be the ones to care for her.

We moved to Michigan eleven days later, and my parents dutifully took me for testing at Michigan State University. Six weeks later, the results arrived: no Turner's. What then, did I have? And why? 

Though hard to believe, in many ways we still don't have those answers today. TRULY.

I was diagnosed with "primary leg lymphedema," meaning the lymph fluid in my limb was compromised, and that was that. In my mid-20s, doctors ordered every diagnostic a girl with lymphedema could hope for:

  • the lymphscintigraphy: lymph dye shot through my vessels, revealing no malformations or blockages
  • the venogram: fluid shot through a vein in my foot, then turned upside down, revealing no plumbing problems
  • the cat scan: lymph nodes were fully intact and functioning
  • the MRI: at least an hour and 15 minutes worth, scanning different areas, specialists conferring, clucking their tongues and scratching their heads

All of the films were sent to a lymphedema expert, Dr. Witte, in Tucson. I remember his call: Your films show no evidence of lymphedema at all. Just do what you can for your condition. There is no answer for why.

In reply I remember saying just one word: "God." It was not a swear word, but an explanation.

At that time in my journey, I leaned on the knowledge that God foreordains everything. He must have wanted me to have lymphedema, especially with no other explanation.

My theology has changed since then. I don't believe in a God who causes our brokenness, but a God who redeems it.

My swollen right foot made me into an old soul at a young age. When kids would yell "fat foot!" on the playground, my heart hurt but it also enlarged. Lymphedema made me feel things more deeply and be more aware of how my body functioned. It made me infinitely more grateful to be able to walk and play and work and serve and love. My heart became passionate and eventually compassionate, as I moved toward others experiencing all kinds of brokenness. This is one of the reasons I am a good chaplain, a sincere friend, and a loving spouse.

When you have the slightest of a limp of whatever kind, you mostly look totally normally, but you know you are terribly fortunate. Life is a gift. 

Another gift wrapped in love: God is close to the brokenhearted. I see that now. It's splayed all over Scripture, dripping through in the humanity of Jesus. The Savior himself even chose to heal lymphedema, in a story I treasure from Luke 14:1-6:

One Sabbath, when Jesus went to eat in the house of a prominent Pharisee, he was being carefully watched. There in front of him was a man suffering from abnormal swelling of his body. Jesus asked the Pharisees and experts in the law, “Is it lawful to heal on the Sabbath or not?” But they remained silent. So taking hold of the man, he healed him and sent him on his way. 

Then he asked them, “If one of you has a child or an ox that falls into a well on the Sabbath day, will you not immediately pull it out?” And they had nothing to say.

I would have nothing to say either. Especially if said  man, who did not have access to current "lymphedema treatment" was heavily swollen, and then he was not. Leave it to Jesus to heal him on the most inappropriate day in full view of scoffers. You guys: Jesus heals lymphedema!

Sometimes he does it in this life, through therapies like the ones I am currently experiencing at U of M hospital. Sometimes he might do so supernaturally, if he chooses to. But from the eternal view, from a future and forever-with-God perspective, it is a done deal.

***

Come back next week where I share my current journey to more healing through my therapy in Ann Arbor, MI: laser, manual lymphatic drainage and a suction pump. I've waited 15 years for this!

Your turn: In what area of your life or body do you need healing? How does this need affect your relationship with God?

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.