In the fall of 2022, I was diagnosed with Mold Toxicity. Treatment will require that I step away from my work at University Presbyterian after 15 years in Youth Ministry. Below are some FAQs that might help explain some of the specifics of this diagnosis and treatment.
What is Mold Toxicity?
Mold toxicity (or mold illness or mycotoxin illness) is what happens when a body is not able to clear exposures to toxic mold. The mold settles into every cell in the body and causes a long list of symptoms. Mycotoxins (the toxins produced by mold) eventually overwhelms the mitochondria (the powerhouse of the cell) causing their decay. Once the mitochondria begin exhibiting biological stress, the body, as a whole, begins to slow down the ability to properly maintain itself.
It’s estimated that 25% of the population has the genetic makeup/malformation that inhibits the clearing of toxins like mold from the body. It’s most likely a MTHFR gene mutation – you can imagine the words I use to describe those letters. That’s why some folks like me are incapacitated by repeated exposure to mold and others show no symptoms at all. Mold Toxicity looks different in everyone and the symptoms are wide ranging, so getting a diagnosis is difficult without the proper testing.
What are the symptoms like?
Everyone is different. But, for me, symptoms include: massive inflammation (my levels were about 13 times what they should have been), chronic migraines, increasing nasal allergies, dizziness, asthma flare ups, chronic sinus issues, increasing food intolerances to gluten and dairy, chronic fatigue shortness of breath, hair loss, brain fog, chronic muscle and joint pain all over the body, temperature dysregulation, edema/swelling, sleep apnea and disturbances, a triggering of Hashimoto’s Autoimmune Disease, carpal tunnel syndrome, unexplained weight gain, gut dysbiosis, kidney damage, and even… a parasite! (yeah… it’s a lot) Some symptoms have been present off and on for 10 years or so but, over the last year +, all of these were hitting at once in full force, leaving me unable to do many regular activities.The chronic muscle and joint pain along with fatigue meant energy was at a premium and I had to use it sparingly to just get the basics accomplished each day.
You seemed fine on Sundays at UPC. We had no idea you were sick!
Yep. You’re right. And I’m glad you didn’t know! I was working very hard to make sure no one suspected a thing at UPC. I just wanted to keep life as normal as possible and continue doing what I was called to do. Not revealing my laundry list of symptoms was also self-preservation. Explaining it all to each and every person was not something I had the energy to do. So, I focused my energy for the week on having “normal” Sundays, even if it meant that I was not able to move much on Mondays. If you didn’t know, it’s because I didn’t want you to know – not because you weren’t paying attention or caring enough.
What is the treatment?
I’ll begin full treatment in February. It will include a wide variety of supplements (many of which I started in October) to help support my body in detox and binders to cling to the mycotoxins and usher the mold out of my cells and out of my body. LED Sauna treatments, dry brushing, epsom salt baths, and lymphatic massage will help my body do what it should have been doing all these years to eliminate toxins. I’ll use castor oil packs to help my liver deal with the massive load it will have to process. I’ll use antifungal and probiotic nasal treatments to deal with what’s colonized in my sinuses (also known as MARCoNS). I’ll have to remove stressors from my life as much as possible. Emotional stress can also add to my body’s work load so my therapist is a vital part of the team to help manage the grief and loneliness that comes with this diagnosis. I’ll add HEPA filters and a water filtration system to my home to reduce any impact on my toxic load. I’ll need to switch all of my household and personal care products to non-toxic, truly clean options. I’ll see my nutritionist regularly with a goal of eating in a way that supports my body through detox (avoiding mold in a variety of foods will be an important supportive step). I’ll have to stay home a lot and be careful to avoid any potential mold exposures. It’ll all require a strict schedule and my full attention.
How long until you’re well?
The timeline has an uncertain ending but I can expect to be in treatment from nine months to two years. The first three months of treatment are the hardest as my body begins to release the mold and toxins it’s held on to for years. I’m told I’ll feel like I have the flu for three months. Once I’ve cleared as many mycotoxins as possible in the first year, we will start to address the other issues they have caused. It affects every system of the body since mold is inflaming every cell of my body. Full recovery from everything will hopefully occur in 18 months to 2 years and hopefully I can put the Hashimoto’s into remission during that time too. Since this is caused by genetics, I’ll be managing it (and the autoimmune disease) for the rest of my life.
Can’t you just take a leave of absence to get better? Do you have to leave UPC completely?
Unfortunately, no. My hope is that once I’m healed, I can then manage recurring symptoms from additional exposures on a regular basis. But I don’t know how long it will take me beyond the 9 month mark to get to a place of management instead of crisis. Waiting on that, being without a youth director for an unknown amount of time, isn’t healthy for the church, the staff, or especially the youth. Our youth deserve to have someone who is physically and emotionally present for them (and whose body will allow for things like sleeping on air mattresses and hiking Lookout).
Will church members still be able to see you or talk to you?
UPC has been my church home for 23 years so, of course, I’d love to stay in touch. But I also will need to maintain healthy boundaries so that I can both focus on getting well and help create space for the church to make strong connections to a future youth director at UPC. Know I will be so grateful for cards, prayers, and seeing social media updates. I do plan to help our UPC seniors write their senior sermons for Youth Sunday if that’s something they want. While I won’t be present for worship after Feb 5th, I hope to work with this special group behind the scenes as they put their faith into words.
How can we support you?
Financial support is a big need. This treatment is ringing in at around $600 a month and is mostly not covered by insurance. You can contribute to UPC’s love gift here if you feel so moved. Hit the drop down menu and click “Kim Love Gift”.
There are lots of products I’ll need that can be gifted. Check out the amazon wish list here.
Send me fun hobby ideas. I need distractions!
Send me your best book recommendations or loan me your favorites.
And of course, I welcome hilarious jokes, memes, or stories from your life. As I start treatment and start feeling worse initially, I hope friends will keep me laughing. Tell me what’s happening in your world! I don’t mind a good 5 minute voice mail about the funniest thing your cat or kid just did. Don’t expect a call back – just know I’m deeply grateful to be connected to you.
Who’s going to work with Youth at UPC now?
Know that our heads of staff and the UPC personnel committee will be right on top of that. They’ve built a truly amazing staff team over the last few years of transition and I’m sure the next hire will be equally as stellar. I know another staff transition is the last thing UPC needs and I grieve that I’m adding to that pain for the congregation. I sure hope you’ll give a new person all the love and support you’ve given me all these years. In the meantime, we have incredible youth advisors and a group of nearly 40 others who are involved in making all things Youth Ministry work at UPC each week. Our volunteers will keep things running smoothly.
What’s next for you?
I’m not sure. I plan to take some time to focus on my health and heal. Keeping up with supplements and treatments is an all consuming venture for the coming months. Once I’m better, I’ll be able to focus on what’s next. The stress of starting a new job is not something my body can tolerate in the near future.
Can we celebrate?
You bet! I’m looking forward to celebrating 15 years at UPC over the next month. Details will be forthcoming.
How are you feeling about all of this?
This is a life altering diagnosis but one that, I hope, will lead to a full and healthy life in the next couple of years. I’m full of grief to leave UPC and have definitely asked quite a few “why me” questions in recent months. Yet, I continually come back to a feeling of gratitude for all of the wonderful years I’ve had at UPC. Fifteen years is a long time in the youth ministry world (plus five years volunteering at UPC before that). I’ve had the privilege of seeing my first youth grow up. I’ve seen some get married, one ordained as minister (and another almost there), and others have babies that they’re now bringing up for the Time with Children at UPC. The UPC Youth have come back over the years and told me just how much this church has meant to them. That is an unusual and incredibly satisfying moment for a youth worker. I’ve had the deep honor of being let into some of the most precious moments in the lives of my congregants – both joyful and deeply painful. What a privilege it has been to be with you in those times! I’m grateful to the congregation for trusting me, not only in a leadership role but also a pastoral one. Walking alongside young people as they start to discern God’s call on their life is an incredible gift and I’m so grateful for all the years I’ve been able to do it at UPC. So while God and I might still need to work out the “why me” questions, know I’ll also be praying many prayers of gratitude for all these years at UPC.
I hope to continue to blog about my journey here as I look for moments of Sabbath in each day. Click the follow button to stay up to date.