On An Island

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I wish this was about me physically being on an island, soaking in some sunshine, drinking a Pina Colada, and relaxing, but alas, that’s not quite the case. This is a different kind of island. The kind that makes you feel like you’re Tom Hanks in Castaway, except I’m spending my days talking things out with my dog instead of a volleyball. 

Maybe that makes things sound dramatic and there’s definitely a hesitation to share this vulnerability in fear of igniting the flames of worry from friends and family, so I guess I’ll state this flat out – I AM OKAY, but things are not. And there’s a difference.

2020 has been hard for all of us (HELLO, PANDEMIC) and this isn’t a “let me compare my 2020 to yours,” but as a promise to myself to open this space back up to sharing more of my personal story, and this feels important to share. (And maybe it’ll also raise some awareness to anyone else who knows something just isn’t right).

I won’t go back to the start of the year or pandemic, and honestly, this isn’t the time to talk about the loss of my cousin, but this is a time to say that this has been a year where I’ve been witnessing my health seem to deteriorate (and it’s NOT COVID). And to make it all the more frustrating, you would likely not even know by looking at me. 

In fact, this didn’t start in 2020, I believe (some) of this started in 2015, lessened in 2018, resurfaced at the end of 2019, and worsened spring (and even more so, summer) 2020. It’s included things like constant sinus drainage issues (which my doctors have refused to address beyond telling me to take allergy medications that hasn’t helped at all), extreme exhaustion, foggy brain, tingly limbs, chemical sensitivity, irregular heartbeat (where while teaching a few yoga classes found myself almost unable to speak or breathe for fear that I’d pass out if I tried to demo a movement while explaining it to students), unexplained weight gain (and inability to lose it), losing massive amounts of hair every single day, having a really hard time running, then struggling to do ANY workouts, extreme thirst regardless of how much water I drink, feeling “hungover” after any amount of sugar or alcohol…and my list could go on.

None of it made sense. None of it added up. And I just kept blaming running the marathon in October 2019 and kept telling myself to dial in my diet, focus on rest, foam rolling, and epsom salt baths, dial back or switch up my workouts, etc. 

Then it hit me. I knew what it had to be and I had to stop lying to myself when my gut has been telling me this for YEARS…

It’s TOXIC mold.

To go back to that timeline…

  • I believe my first potential exposure was while living in the RV during my 50 States In A Year charity fundraising tour (unconfirmed but I used to wonder)
  • I believe my second exposure was while working for Greater Good (again, unconfirmed but an old coworker has been dealing with toxic mold & Lyme disease and believes her toxic mold exposure was at that job)
  • And my third exposure, my current apartment that I moved into a week or two after running the Chicago Marathon in 2019 (and why it became so easy to not think about a potential issue in my living situation)

I talked to my old coworker about her symptoms and there were SO MANY similarities and I started researching and reading about other people only to see their stories sound so similar to mine. I knew I was right so I called my landlord. He asked where I saw the mold and I had to say “I haven’t but…” and he came over the following day, we looked in my basement, we found random boards COVERED in mold, we found discolored cement walls, and questionable spots on the ceiling. We got a mold specialist out the following week and today they were remediating my basement.

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So why am I on an island?

There’s a lot of unknowns and misinformation with mold illness, which is made worse by the fact that multiple people living in the same environment can have a very different reaction. There’s competing information on whether or not remediation is enough or how much remediation would need to be done for someone who is having a reaction like mine to still be safe living in the home. 

Toxic mold releases mycotoxins and those mycotoxins essentially embed themselves into porous items and cling to them. This doesn’t just include our bodies, but also our clothing, furniture, carpet, paper. Many people may be able to rid the mycotoxins from their body just fine but others can’t, which is when they start to get this laundry list of symptoms that don’t add up. (This is how you can have multiple people in a home and both not have a reaction.) 

Doctors and experts who have started to dive into this illness have learned that the mycotoxins on our things can continue to make us sick, even if we leave the environment or have only a partial remediation done (also because it can live behind the walls that you can’t see but will still make you sick). This means, it’s recommended to more or less discard all of your belongings, especially the items that you can not easily clean (with a special cleaner made to kill mycotoxins-not your average lysol or all-purpose spray). 

I have found a great functional medicine doctor in Grand Rapids who I’m working with to help detox my body and get my health back on track. I’m so grateful for the referral and beyond grateful that this woman has experience helping patients heal from mold. She reassured me in the tests I had already ordered for myself were exactly what she would want me to do, encouraged a few others, and has set me up on an (intense) supplement protocol. 

I have not been able to immediately move out of my home, especially since having a dog, it’s a lot to ask for us both to crash on someone’s couch. I’ve been sorting through my things and having to make tough decisions on what to throw away and what I think I can clean and feel OK keeping. I’m having to manage my own feelings of saying goodbye to various items and the fear of letting others down or trying to explain why I’m throwing things away they don’t think I should or don’t want me to.

The decision fatigue (on top of my current increased exhaustion) is CONSTANT. I’m seeing the money I’ve spent on various items get thrown in the trash and emergency savings dwindle. I’m seeing future purchases of a new bed, couch, chairs, luggage, pillows, and pet supplies add up. I’m thinking about where to move and how to do it. Etc, etc.

And at the end of the day, this isn’t anyone else’s mountain to climb but my own. Hence, the island.

I’m grateful for this doctor I trust; I’m grateful for the emergency savings I’ve been building up that’s there for me to tap into; I’m grateful for the fact that I’ve spent YEARS taking care of my body so when something like this happens, I have a better foundation to heal; I’m grateful for the friends who have taken countless crying phone calls or hysterical text messages when I literally just felt like I couldn’t take it; I’m grateful for the people who have come back and apologized for making me feel like I was making a bigger deal of this than it’s worth; I’m grateful for the supplements that are going to help heal my body.

But despite all of that, some days, it still feels like I’m on an island and trying to find a way to make a boat out of coconuts and palm trees so I can paddle away…or kick down the outhouse door to save myself, but I’ll save that story for another day. 


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2 thoughts on “On An Island

  1. Charlotte

    I’m so sorry to hear you have been dealing with this but so glad you have found the source of all that pain and discomfort. You are on the path to healing—as difficult and extreme as it may feel, having to throw away so many beloved belongings.

    I’m glad you have a doctor you trust and that your landlord cane over immediately to check out the issue. And it’s wonderful the people you need to be the most understanding have been. I’m sending so many hugs your way and hope you feel better soon! PS: I’m sure this goes without saying but you are never alone on that island and I am here if you need an ear!

  2. Melissa May

    So glad you figured it out and are on the right path. You may be on an island, but it sounds like there’s a rescue boat headed your way. ❤️❤️

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