charlie's song

I Guess I’ll Just Eat Worms

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I’ve known this post was coming, but it’s one I have dreaded writing.  We have received many emails asking what our specific symptoms are, and what our treatment plan will be. I know that one of the scariest parts of our story is that it really could happen to anyone, because toxic black mold is something you almost never see.  It lurks under the surface, hidden in walls and ceilings, slowly destroying your lives.  And you never even saw it coming.  I know that our story has made other people wonder if they too are unknowingly being poisoned by toxic mold, and if we can help even one person, this post is worth it to me.

We’ve also had many questions about how we ever even figured this out in the first place.  I want to answer these questions.  Not because I feel like answering them…because a huge part of me just plain doesn’t.  This is a hard thing for me to write about.  It’s hard to write about because it feels boring and newsy, and the kind of thing you would tell your doctor or your mom, not a few thousand total strangers.  But more importantly…it’s hard to write about, because it’s extremely personal.  And strikes very close to my aching heart.

But I really believe that there are people out there who are suffering deeply, because of unexplained illnesses that may very well be caused by toxic mold poisoning.  I believe that there are people out there who are struggling with unexpected and unexplained infertility, and it is very possibly due to toxic mold that they simply cannot see.  I had three healthy babies in four years, and then lost three babies in a row in less than eleven months time.  I know that stillbirth and miscarriage happen to a lot of people, for a lot of different reasons, and that many of them go unexplained.  But there is an explanation for mine.  And after all that we have suffered, I do not want to leave others alone in their suffering, if our story might help them in any way.

I am not a doctor.  But I am under the care of one of the best environmental doctors in the world, and I trust her implicitly.  After seeing 14 doctors in 14 months, I can spy a bad doctor from a few thousand miles away.  And I am so incredibly grateful I have finally found a good one.  I can only share our experience, and our symptoms and treatment plan.  This is not a medical journal, and if you do have concerns that you may have been exposed to toxic mold, I would encourage you to see a good doctor, who specializes in this, though they are very hard to find.

Where do I begin?  I guess I’ll start with The Worms.

About eight months after Charlie died, I felt like my body was starting to shut down. I was getting worse with each passing day, and none of my doctors seemed to know or care what was wrong with me.  The worst kind of doctor…is the one who tells you you’re “fine.” And I had lots of those in my life.  I was exhausted all of the time.  I had a deep pain in my liver every day.  I had sinus infections, one of them so bad that it caused permanent damage to my hearing. My thyroid was failing, so badly that my basal body temperature was a whopping 96.7, and I was literally freezing in July.  I had horrible brain fog, and couldn’t remember simple things in spite of the fact that I’ve always had an amazing memory.  I had a raging ear infection, and it felt like the infection was actually starting to take over my entire body.  At one point I told my doctor, “I feel like my insides are actually crawling.”  I couldn’t lift my arms above my head without them going numb.  And most of all, I couldn’t get pregnant, and then I couldn’t stay pregnant.  In spite of what my doctors said…I knew I was so entirely not “fine.”

By that point I had been struggling with horrible eczema on my hands for about a year.  It is the first symptom I can remember having, and it started when I was seven months pregnant with Charlie.  My hands would explode in a horrible, bumpy, red rash, and they would become so inflammed that I would wake up in the night in excruciating pain.  They would bleed, and scab over, and heal…and then flame up all over again.  I went to the dermatologist twice, and she just told me, “This happens sometimes during pregnancy.” But it never, ever went away.

I was so entirely fed up with all of the subpar medical care I was getting, that I finally found a doctor in town who specialized in endocrinology.  He was my least favorite doctor of all fourteen.  And ironically, he is the one who probably saved our lives.  During my first consultation with him, he asked me if we had ever had our house tested for mold.  The only reason he thought to ask…was because a former patient of his had suffered a still birth because of mold poisoning.  He knew nothing about mold beyond that point, but I am so incredibly grateful that he mentioned mold that day.

He also mentioned about a hundred other things.  He suggested I go on a gluten-free, sugar-free diet for 12 weeks to help kill off the infection in my body.  He suggested I get all of my amalgam fillings removed from my teeth, to reduce the toxic load the mercury fillings might be having on my body.  He also suggested I take earthworms.  Yes…worms.   The worm supplement was supposed to help with blood circulation, because earth worms are experts at “breaking things down.”  I honestly have no idea if it made a bit of difference, but I took my worms religiously.

All of that to say, it was a difficult three months.  I got eight fillings removed at one time, and it was such an invasive dental procedure that I threw up three times in the dentist chair in one morning.  The dentist loved me.  I got myriads of blood tests done, and went through the entire holidays eating no sugar, and being completely gluten-free.  I was on a heavy detox program to remove toxins from my body and about 60 supplements a day, and yet my body was still failing.  It was a long and frustrating process of getting the house tested for mold and very difficult to get clear answers on what was going on in the home, and especially in my body.

And in the midst of it all, I got pregnant.  And then, less than four weeks later…another sweet baby came and went from our lives.  What was happening to my heart…completely overshadowed what was happening to my body.

But I was so incredibly sick of being sick, and I was not getting better. I remember looking in the cupboard at the 60 supplements I had to take that day, and thinking, “I am eating worms…actual worms.  How did I get to the point where I would actually say, ‘Nobody can help me…I guess I’ll just eat worms.'”

I got there…the same way everyone with unexplained, chronic pain gets there…I woke up one day, and I was suddenly no longer healthy.  One symptom creeped up, and then another, and no matter how many doctors I went to, no one could help me.  And before I knew it, I was sick, and in excruciating pain.

Even as I write this, I think to myself, “Who in the world, wants to hear about my boring list of symptoms?”  Because I don’t even want to write about it.  But there are millions of people in this world who live in chronic pain.  They spend all the money they have to spend, and even money they don’t, on doctors who simply do not help them get better. They feel trapped in a body that is betraying them on every level, every moment, of every day.  And I never really understood how paralyzing it is to live with daily, unexplained pain…until it happened to me.  So, if you’re still with me, and you’re still reading my boring symptoms list, please hear this…

If you are one of those people…I am so deeply, deeply sorry.  I am so sorry for the moments in your children’s lives that you have missed, because you were too sick to even get out of bed, let alone bake cookies for the school Christmas party.  I am so very sorry for those missed memories.  My year has been filled with missed memories.  I am so sorry that every moment of your life has been clouded by fear and uncertainty.  I am so sorry that your days have been wrecked by debilitating physical pain, and the gnawing soul pain of the “not knowing.”  And I know that for some of you, even knowing why you’re sick, doesn’t take it all away.  We finally know what is causing our sickness…and these have been some of the sickest days of my life.

And if you are not one of those people…please bear the burdens of those around you who cannot take a moment of heath for granted, because they are so few and far between.  I am so unspeakably grateful for the people in our lives, who took advantage of a time when they were healthy…and could have done anything with it…to love on us in our pain.

All of that to say…by the time I ended up in Dr. Hope’s office, I was so entirely weary.  But she listened to me.  She has more medical degrees on her wall than most of the doctors I’ve seen, but she didn’t treat me like I was less than her, just because I was the patient. She believed me.  And she helped me.  And why…well, because her office is filled with patient after patient who has been ignored and minimized by doctors who know absolutely nothing about toxic mold poisoning.  Her office is filled with people who have been sick for a very, very long time.

I remember hesitantly telling Dr. Hope about my “heavy arms symptom” at our first appointment.  And without a moment’s hesitation she said to me, “That…is one of the most common symptoms of mold poisoning.  Many of my patients complain of heavy arms, or even that their heads feel too heavy to lift up most days.”  The moment she said this, it was like the clouds parted and angels started singing.  There was a REASON for my pain.  I wasn’t just crazy, or delusional, or being dramatic.  Someone finally acted like it was not normal to not be able to hold my hands up to the steering wheel, or to carry my little Sophie.  Someone was familiar with this symptom.  Someone knew WHY. And someone was finally going to help me.

I cannot tell you the relief that came in the finally knowing.  I no longer had to just eat worms, and hope it was “helping.”  I was sick.  And someone believed me.  And someone could finally tell me why.

Many people have asked us how we are doing physically, and how they can be praying. Honestly, it has been a very rough couple of weeks.  The medicine we are on to remove the mold from our bodies makes us very, very sick, and I feel completely wrecked most days.

And it is an extra wound to carry that all five of us are sick at the exact same time.  The kids have been incredible.  They have done an amazing job taking their glutathione every morning, and their activated charcoal every night.  Every night Freddo says to me, “Mommy, why do we have to drink this stuff…it looks like rocks?”  And it does.  It actually looks like someone grabbed a bunch of ash from a fire pit and threw it into his cup.  But our sweet kids take their ash every single day.  It gives them tummy aches, and headaches, and it makes my heart ache just watching the mold continue to wreak havoc on their little body’s.  But there is only one way to get it out.  And they have been so incredibly brave.

In many ways, the kids are doing far better than I am.  Within a week after we moved out of the toxic house, the eczema that I had struggled with for over a year…completely went away.  But Dr. Hope had warned us that as we started to heal, our bodies would become more reactive to the mycotoxins, especially the mycotoxins on our old, exposed things.  I didn’t totally believe her, but the other day I was out in our garage going through insurance papers from our old house.  Within minutes of touching the paper from the old house…my hands became completely inflamed.  It was the worst outbreak of eczema I’ve ever had, and I woke up during the night multiple times last week, in so much pain that I couldn’t even go back to sleep.  It is so incredibly frustrating that my hands are once again inflamed.  My ear infection is back in full force. I have a headache, a sinus infection, and the worst brain fog and exhaustion of my life.  And those are just my symptoms.  We are still, very, very sick and would so appreciate your prayers.

So, that’s it.  A very long, boring symptoms story.  But all of that, brings me to the thing I really wanted to say.

I hate being sick.  I really, really hate watching the people I love most, being sick right alongside me.  And there is nothing I have hated more in this world…than having to bury three precious babies I had wanted to keep.

But I came across a quote the other day, and I can’t get it out of my mind.  It has stuck with me, and I’ve thought about it often, especially on the worst days.

I thought about it the other night at 3 am…when I sat on the bathroom floor, weeping, because my hands were so inflamed I couldn’t possibly sleep.  I thought about it as we went through our garage…and threw out even more stuff from our old house that I had hoped we would somehow get to keep.  And I thought about it as another month went by where I am so incredibly sick that the idea of trying to trust God for another baby…has to be the absolute last thing on my mind.

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The first time I read it, it made me mad.  It seemed way too trite and pat.  The word “kiss” was especially hard to take.  I don’t want to kiss the things that have made me ache so badly.  I don’t want to kiss suffering…I want to beat it up.  And mostly, I want to run as far away from sorrow as my legs can carry me.  My heart is bleeding as bad as my hands, and it’s hard to think of welcoming suffering, let alone “kissing” it.

But the more I’ve thought about it, the more Spurgeon’s words resonate with me.

I get waves.  Waves have been a familiar theme for our family over this last year of pain. Life’s sorrows totally do “like sea billows roll.”  And they more than roll.  They slam into you relentlessly, and you wonder time and time again, if you are actually just going to drown at some point under all of this pain.  Emma asks me multiple times a week, “Mommy, why does our life have to be so hard?”  Her question hurts every time.  We have felt slammed over and over again…by the sorrows that ravage our lives.

But I really think there is an eternal truth to these words…and it has breathed fresh life into my gasping soul this week.

Every single wave…has slammed us into somebody.

And not just somebody, the Somebody who we asked, long ago…to take our lives.  To save our lives.  To sustain our lives.  To use our lives.  To redeem our lives.  And most of all….to be with our lives.

I did not feel close to God as I wept over my inflammed hands the other night.  But He was with me.  I know He was with me, because the only thing on my deliriously exhausted mind at 3 am that morning were these words, “Thank you God, for Job.”  I kept saying it, over and over again.  A little delusional, and mantra-like.

But I felt such genuine gratitude in that moment…that God did not leave me in that moment alone.  That God did not leave me in that moment, without someone who had gone before me through it.  Job’s boils hurt so much that it says he, “found a piece of pottery to scrape himself with as he sat in ashes.”

We literally sit in ashes right now.  We take 12 activated charcoal tablets a day, to help bind up the mold as the toxins are released…and it’s literally just ground up ash.  It means the world to me that Job sat in ashes.  Because right now ash is ever on my mind.

It means the world to me that Job scraped his bleeding sores in the night, just like I scrape mine.  That Job knows exactly what it felt like to have to bury the children he loved more than anything.  That Job knows what it feels like to live with prolonged, varied, and excruciating suffering.

Because in the end…after all that he had suffered…

Job still kissed the waves.

Job still believed that God was good, and that God was love, in the midst of every unlovely thing that came his way.

Job believed that being slammed against the Rock of Ages was still, in the end, everything that matters…when everything else that matters is taken away.

“As for me, I know that my Redeemer lives, And at the last He will take His stand on the earth.
Even after my skin is destroyed, Yet from my flesh I shall see God;
Whom I myself shall behold, And whom my eyes will see and not another. My heart faints within me!”

It has been a very difficult couple of weeks.  My body especially, is not responding well to the mold medicine and I have been very, very sick.  It felt like a real slap in the face that suddenly, after they had finally gone away, the boils are back in my life.  I wasn’t thinking particularly holy and glorious thoughts in the bathroom at 3 am that morning.

But I did feel a deep, holy gratitude for every detail of Job’s life.  Gratitude that God included Job’s story in the 66 books we have to cling to as we stumble through this life. Gratitude that Job walked with God to the very end of his suffering.

And most of all, gratitude that the God who sustained Job’s life, and far more importantly…his faith…is the same God who sustains both yours and mine.

I’d really like to put a bow on this post.  To say, “This is what we had…and now we are all better.”  But we’re not.  The waves crash on and on and on.

And that’s…why Job’s words give life.  Because someday, the waves will cease.

Someday…Jesus will come in power, and take His stand on the earth.

Someday…He will stand over every storm of this life,  and He will say once and for all, “Peace be, still.”  And the peace will stay.

Someday…even after my body is destroyed, I will see the Rock of Ages, with my very own eyes.

Someday…He will introduce me to my babies.

And someday, there will finally, finally, be an end to all of this pain.

And so, we wait.

 

 

 

 

 

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14 thoughts on “I Guess I’ll Just Eat Worms

  1. Thank you, Misty, for your bravery and courage in sharing your story. I’ve been reading for a few months, and God is using your words to challenge and encourage me in a season of suffering of my own. I’m reminded of another verse about God our Rock: “From the ends of the earth will I cry unto You when my heart is overwhelmed; lead me to the Rock that is higher than I.” Ps. 61:2. Hold fast to him, dear sister! I will pray for you and your family when the Spirit brings you to mind.

  2. Oh Misty, I am so deeply sorry for your pain and suffering and love you all so muc
    h. You are continually in my prayers and thoughts throughout the day and night. Love, Robbie

  3. I have been reading your incredibly difficult story and am so sorry for all of your pain, suffering and losses. My partner is suffering from a similar chronic illness – currently diagnosed with Lymes disease and mold toxicity. I am wondering if you would be willing to share your doctor’s contact information. While we don’t live in the same region of the states, I wonder if she might make a recommendation for a similar doc in the midwest. We have had the same challenge of going from one doc to another with much of the very same frustration – lots of “this is a mental illness” and we know that it isn’t – this is a physical illness. Thanks for anything you can share

    • hi jeanette,

      thanks for your message. I am so sorry to hear that your partner is suffering from similar things. I can give you dr hope’s info and would totally recommend her (as she also works with Lymes patients). Even if you have to fly there, it might be totally worth it, as she has people fly from all over the world to meet with her. But…I also have a few names from dr. hope that you might be able to look into as well. Please let me know if there’s any other way I can help.

      love, misty

      dr. jeanette hope- santa barbara, ca 805.698.7483

      she also recommended these people, but I don’t have their info. you could probably just google search them….

      Adrienne Sprouse in NYC
      Irene Grant- (an infectious disease specialist in New York)
      Donald Dennis- in Atlanta, GA
      Jill Carinhan- in Boulder, CO
      Alan Lieberman- in North Carolina
      And Michael Gray. (i can’t remember where she said he’s located.)

      • So thoughtful! Thank you so much, that was very generous for you to contact and find these other options. I’m very appreciative and so hopeful for renewed health for you and your dear family.

  4. Thank you so much for sharing this.
    It gives faith.
    You are all in my prayers.

  5. Thank you for your honesty and transparency. For your bravery and ceaseless praise. The Lord shines brightly through you!

  6. I’ve been following your story for a month or so and I’ve often wondered how you put the pieces together and figured out that it was mold. It is scary to think that this could happen to anyone and that so few doctors even think of mold poisoning as a possibility. Thank you for sharing. Your writing has taught me so much about suffering. I’ve heard many great preachers and theologians try to explain suffering and I’ve always struggled to understand how God can be both all-good and all-powerful, yet still allow us to suffer. Your posts have taught me so much. They hold so much credibility because you aren’t just talking about hypotheticals. You’re living it out. I have hesitated to write this because I don’t want to sound like I am somehow benefitting from your pain and “oh isn’t it great that I can grow through your tragedy?” That sounds so insensitive. But I do want to encourage you to keep writing these posts. I know God is using them in my life and in the lives of others as well. Thank you for sharing. Praying for your family.

  7. Misty, it was great meeting you last night, although quick, I do hope we’ll get to chat more, and get to know one another. Thank you for sharing this post. My mom was very ill while I was growing up, and still is, due to a very rare disability/disease. I think it’s so important to really try to understand those who are in the midst of suffering because no matter how exempt we think we are, none of us are, life is full of suffering. I think to really love and understand someone in suffering it starts with listening to the reality and the details of their pain. So thank you for sharing. We will continue to pray for encouragement and healing for you and your family.

  8. Misty,

    Thank you for sharing this. I found out about your family through Joy Prouty on Instagram, and have been following for a short while. I can’t help but think of you often. My family and I had a toxic exposure last year and I remain ill ever since. Please contact me if you ever would like to chat even just back and forth through email with another family who is in somewhat of a similar situation…if you have the time (I know, haha…it is really tough and heartbreaking being a mother and going through all of this, I know).

    Love and prayers,
    Martha

  9. I discovered your blog yesterday and just read this post now. Once again, I’m speechless. Well, not exactly; I am commenting after all.

    The most anguishing part to read was that it is your entire family that is suffering. Even your children have not been spared, and that must seem an added, unspeakable level, of life’s cruelty to a mother who suffers.

    Thank you, once again, for the honesty. The Spurgeon quote took my breath away. I’ve had my own waves, different ones to be sure, but terrible in their own way…disorienting waves that I thought dashed me onto sharp and jagged rocks. I have HATED those waves. I realize now that they pounded me against the Rock of Ages, and I am thankful for that…but not ready to kiss them yet.

    You have given me much to think about, and pray about.

  10. Hi Misty,

    I continue to pray for your family. I commented on another post and offered to scan your irreplaceable documents for you. I am still happy to this. Please contact me at kristaschroe@gmail.com if you are still interested. Much love to you and your precious family.

  11. Hi, thank you for sharing your story and testimony. I am praying for you and your family. I also wanted to mention to you about an essential oil by doTerra (100% essential oil) named On Guard. This was used in some school classrooms ((just a few drops in some water, in a diffuser) and it ended up killing the mold in the science laboratory! You could also put some on your skin (smells wonderful) and even use some in some recipes and in your water. Just a thought you might want to research and run by your caretaker. I hope this is helpful to you. My heart goes out to your family. Be strong in the Lord!

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