Wednesday, April 13, 2016

Lyme Disease and Foot Pain: My Journey the Last 3 Months



I haven’t blogged much recently, and it’s taken me awhile to get this down.  I’ve been so discouraged and confused by what’s happening in my life that for several weeks I had no words to capture what I was feeling or how God was working.

I want to write something now, before I have answers or healing, because I’m still in the middle of the story and I don’t know how it ends, and I want to be authentic here.  I hope maybe this encourages someone who does a random google search for Lyme and foot pain (not like my blog would show up first, but you know, if you’re desperate enough to keep scrolling down …)—but mostly I hope this encourages anyone who has pain, which is all of us, in our different ways.

So here’s where I’ve been these last three months:

Late January

I had no idea that Friday, January 22nd, would be the last day I walked well.  We were preparing for a blizzard, with about three feet of snow predicted.  I visited a friend that morning, and spent the afternoon preparing food in case the power went out.

Saturday, January 23rd, I noticed in the morning while doing my lunges that the arch of my left foot hurt.  I normally do ten lunges, but I had to stop around five because of the pain, and I didn’t want to make it worse.  I brushed it off—maybe I’d slept on my foot funny?  Maybe it cramped somehow?  It would be better tomorrow.

I had been on a Whole 30 detox diet for about three weeks at that point, and I was feeling amazing.  I’d put my postpartum anxiety and insomnia behind me, and I’d lost a good bit of baby weight.  My cycle was still irregular since I was breastfeeding my seven-month-old baby, but had just begun again, so that day I felt tired, crampy, and a bit depressed.  I hope that’s not TMI, and I have no reason to think my diet or cycle necessarily brought on my foot pain when it did, but I’m writing it down in case there is a correlation.

My foot hurt the entire day, but what felt more surreal was that three feet of snow was piling up outside.  I ignored how I was feeling, but the next day, Sunday, it was worse.  In the mid-morning we gathered in the family room for some time together, and I remember being grateful I could get off my feet and alleviate some of the pain.  That would be the first of many times I would think that!

Ben spent most of the day shoveling out our driveway, and to give him a break, I volunteered to take the kids for a walk in the snow around the block.  I reasoned that if I put on my good sneakers, I’d be fine.  I’d never not walked because of foot pain and it seemed silly to start now!  So with the baby in the carrier and the two bigger ones in front of me, we went out to get rid of our cabin fever and explore the white world.

When I got home, my foot was killing me, and I told Ben about it.  The next day the pain was even worse, and I was walking with an obvious limp.  Ben did the grocery run to Costco for me (and I have not been to Costco since!), while I stayed home and did deskwork.  I needed to start one load of laundry, and trying to walk down the stairs with the laundry in hand was so painful.  I was beginning to get scared—what was wrong with me?  Why wouldn’t it go away?

We went sledding at my parents’ house—it was a strange Monday with snow piled high and everything cancelled.  My mom encouraged me to see a doctor, and though the others wanted me to put my feet up while they sled, someone had to make the hot chocolate and help the kids in and out of the house and feed the baby and—I was not accustomed to slowing down and letting others do things for me.

On Tuesday I saw a podiatrist.  My left foot was cold and swollen, beginning in the arch and radiating outward, cramped up and tight.  I was limping gingerly on the side of my foot, and it hurt to be touched.  An X-ray revealed nothing and the podiatrist had no idea what was wrong.  He prescribed Motrin and told me he would schedule an MRI if it wasn’t better within a week.

A week?!  I didn’t know how I was going to survive that day not walking.  I limped out to the van and cried in panic, because I hurt and because life seemed impossible.  I had to pick up my kids from my parents’, nurse the baby, drive home, make dinner, clean up, put them all to bed … without walking?

The next few days were the worst.  I sat down most of the time, with help from Ben and my mom, hoping if I rested my foot completely, it would heal.  I wore a foot brace or used a cane when I walked.  The pain did not change, so I went in for the MRI.
 
The latest thing in footwear.

Early February

Early February I waited for the results of the MRI, which were a long time in coming, and when they finally did, revealed nothing.  My podiatrist was completely stumped.  There was clearly coldness and swelling—enough objective symptoms to show I wasn’t just imagining this.  I was so tired of people seeing me in a foot brace and asking, “What did you do?” and having to answer, “I have no idea!”

Part of me felt angry—this doesn’t just happen!  You don’t just get up one day unable to walk anymore!  That’s impossible.  So why is it happening to me?

I felt angry with the doctors—this is the 21st century, and you can’t tell me what’s wrong with me and fix it?  What am I paying you for?

I felt a sense of unreality about the whole thing—that I would wake up and realize it was a nightmare and say, “Ben, I had the craziest dream.  I suddenly couldn’t walk and no one knew why ….”

Late February

My daughter’s preschool teacher, who used to be in the medical profession, wondered if I had a stress fracture.  I researched that and learned those can escape detection from both x-rays and MRIs.  So I basically let her diagnose me.  Now I had my answer for people—“stress fracture.”  And I pinned my hope on March—in 6-8 weeks a fracture should heal.

I went to see a naturopath who fitted me for orthotics.  She agreed that a stress fracture was the most likely explanation for my symptoms, but it didn’t make complete sense—I wasn’t obese, I wasn’t a runner, none of the normal reasons for a stress fracture.  She also warned me that with all I was doing on my feet as a mom to three little ones, I may not heal until April.

This has become more of a long-term issue than I’d ever expected.  On February 29th I applied for a disable parking permit, trying to navigate a busy life with a bad foot.

Early March

A couple people had mentioned Lymes to me, but I had dismissed it—I had no classic symptoms, I didn’t go out in the woods, to my knowledge I’d never gotten a tick bite.  Still, when I took our baby in for his well-check, my husband encouraged me to get a Lyme test while I was there anyway.  Our family doctor doubted it was Lymes, and I agreed with him, but getting the test wouldn’t hurt.

When the test came back positive, it rocked my world.  I sat there on the phone, with the kids yelling around me, staring at the computer screen, thinking, “What?!”  What if I had Lymes, but it was completely disconnected from my foot pain?  What if I developed those horrible physical and psychological symptoms you hear about?  When and where could I have gotten this?

Once again it didn’t make sense and I wanted to argue with reality and prove this could not be happening to me!  What if the test was a false positive?

I started on amoxicillin, the only antibiotic safe for me while I was nursing.  After the first wave of confusion came a wave of hope.  I finally had my answer.  Now I could finally treat it.  I learned about someone with foot pain who was diagnosed with Lymes and healed within ten days of starting on antibiotics.  So that was my hope—ten days.

Late March

We went to Williamsburg with my in-laws for a week, and I hopefully packed a left shoe, wondering if I would heal enough to be out of my foot brace before we got back.  My in-laws were a wonderful help during our trip, and my husband was supportive as always, but I realized vacationing with a bad foot can be really frustrating.

My personality is fast-paced and active.  I like to go places and do things.  I like to explore.  I wanted to walk through the resort where we were staying.  I wanted to go along on all the trips.  I did not want to sit on a couch with my foot propped up.  I did not want to ride in a wheelchair.  I did not want to see the looks of pity when I hobbled into the pool area with my kids.

But this was my reality.  I became grateful for how considerate our country is toward those with disabilities.  There is so much about America we can complain about, but this I will say—our culture is awesome to have its disabled parking spaces and permits, its wheelchairs, those kind people at vacation destinations like Busch Gardens who make sure you can fully enjoy the experience even if you can’t walk.  In other cultures and other periods of time disabled people may be left behind or stuck at home.  Being stuck at home unmoving makes me feel crazy.  I am grateful to live in a place and time where I can go out and feel respect and kindness.

For instance, at Jamestown I got to borrow a really fun scooter for free.
Early April

By now I’m realizing that amoxicillin is not going to be the quick fix I was hoping.  I’ve experienced some improvement, which has given me hope—“Look at me!  I can now put weight on a little more of my foot—okay that hurts.  I’m sitting down now.”  But seriously, I have a little more range of movement and less pain.  The deep inner ache has never gone away, though, and I feel like I’ve plateaued where I am.

So let the research begin!  My husband finds research fascinating.  I get initially interested but quickly overwhelmed.  There seem to be as many causes and cures of Lymes disease as there are people to voice them.  Antibiotics, essential oils, homeopathy, herbs, Vitamin C therapy, and much, much weirder. Some of the cures sound bad enough I’d happily choose the disease.  Going off coffee, for instance.  That is so extreme.  That really cannot be necessary.  And would probably make no difference.  Okay, that was a little tongue-in-cheek.  Some of the proposed cures are much weirder and I would not mention them here!

What’s made the complicated research all the more complicated is that my options are severely limited by breastfeeding.  I don’t physically need to nurse my baby at a chunky, healthy ten months old, but I sure do want to.  I’ll admit I’ve become a little militant about attachment over the past few years, and when I have a snuggly baby boy who belongs to me and loves to nurse and who I am in no hurry to wean, I hate the situation that brings me to this decision.

I feel angry because if my foot heals, everything else I can get back—my ability to walk, exercise, fully function—but I know I will not get back this breastfeeding season with my son.  And I grieve that loss.

But as of now, none of the breastfeeding-safe options like amoxicillin, homeopathy, and safer herbs are getting to the root of my problem, and time is not necessarily on my side.  So next week I stop nursing my baby and pull out the big guns, and I’m hopeful that within a month I will get better.

But I have thought that before and I know I can’t count on it, and it’s possible this may be a longer journey or even my forever.  When no one knows exactly what’s wrong or why, no one can promise with any confidence when and if and how it will get better.

We hired the cat at the farm to block the view of my boot in our Easter picture.
 
I’m not panicking like I was at the beginning, though.  Like a friend told me this weekend, at the same time as we keep fighting and keep trying new things and keep hoping, we also adapt and accept our new normal.

Not walking has strangely become my new normal.  Our whole family has adapted to it.  I only shop online.  Ben does the Costco run; I make the list.  Ben takes the laundry up and downstairs; I sort and fold it.  I take my kids places, park in disabled parking spaces, and sit and watch them do their thing.  I avoid situations that require walking.  I strategize how to minimize my steps in the house—I’m walking down the hallway!  I can bring four things with me that go down there, do three tasks while I’m there, and then bring five different things back!

We hire help.  Our kids step up to the plate and help a lot more and become more independent.  We are really, strangely, okay.  There is a lot that I would love to be doing that we’re not—but we are surviving.  The strange thing about my condition is that other than the constant pain reverberating in my foot, I feel awesome.  In many ways I feel healthier than I’ve been in a long time.  Good to know all the stuff I’m taking is at least doing something for me, right?!

This weekend I visited with several friends who are suffering through different situations.  I realized that one of the perks of my pain is that it is so obvious and public—hello, I’m Lisa, and I have a bad foot—see, here’s my brace.  For a lot of my friends, their pain is more complicated and private.  But we all suffer in different ways, so come, Lord Jesus, and put an end to this.

I’m in the middle of reading A Praying Life by Paul E. Miller, and this passage was riveting to me:

“To live in our Father’s story, remember these three things:
  1. Don’t demand that the story go your way.  (In other words, surrender completely.)
  2. Look for the Storyteller.  Look for his hand, and then pray in light of what you are seeing.  (In other words, develop an eye for Jesus.)
  3. Stay in the story.  Don’t shut down when it goes the wrong way.”

I’m in the middle of the story, and it is messy and hard.  Some days I feel hopeful, and other days I really don’t.  But I’m trying to stay in the story, and follow the Storyteller, and see where this goes.

1 comment:

  1. I'm so sorry about all you've been going through. I pray the new treatment will work and you'll be back to walking!

    ReplyDelete