down the rabbit hole

September 10, 2013

i’m pretty sure there’s not a bottom at the end of this mental tailspin. this is not to say that i am specifically in a mental tailspin, it’s really more of a wormhole, a domino of thoughts and i’m sharing it because

a) it’s probably going to blow my credibility and i might as well give that up sooner rather than later (do i have that? probably not. but it’ll blow whatever i have that resembles credibility).

b) you’ve probably taken your own sweet swan dive into this type of thinking and, god forbid, i ever let you think one single, crazy symptom is yours and yours alone.

here’s the good part: i’ve been off treatment for awhile and took a real vacation, sandy beaches, blue skies and all. two days before my departure, my dermatologist said to me, “hawaii is the last place you should be going right now.” thanks. it’s not like i spent my entire childhood dreaming that i would fit in there or as if the whole trip was planned and paid for already. oh wait…

"every time the tide comes in to take me home i get scared and i'm just sitting here alone" -r. spektor

my first time in the ocean in six years. kahului bay, maui, hi. such a sweet homecoming.   “every time the tide comes in to take me home
i get scared and i’m just sitting here alone” -r. spektor

she couldn’t have been more wrong.  i had the best trip i’ve had in ten years. i swam in the ocean. i climbed up a bamboo forest to try to get a wudan-like photo (the prednisone face really killed the modeling). i woke up early and snorkled in brutally choppy waters. i felt fantastic, as much as i could have ever hoped to. it wasn’t all easy and i didn’t feel perfect, but it was beautiful and freeing to, for once, feel like i was an almost-healthy person. i still needed naps and couldn’t be out in the sun for long, but natural sunblock companies should sponsor me. i slathered myself down every half-hour. i have to say that i wholeheartedly believe that just being in the ocean is healing. sure it’s lack of pollution, fresh air, clean water and sunlight, but the salinity and the calming effects of the waves? nature’s huge epsom salt bath with a built-in meditation session! and you know what? i freaking loved my hair out there. everyday was a good hair day. yeah. i said it.

so i’m feeling better, or i was feeling better until i got home to brooklyn, and then i felt sick. naturally, after years of medical skepticism from everyone, i asked myself, “am i really sick or was i just expecting to get sick so i did?” boo, questions. you’re shitty ones. the “is this somatic?” line could kill us all.

so, okay. not somatic. autoimmune diseases suddenly flaring up? lyme and co-infections telling me that my immune capital has run out? toxic mold exposure? environmental toxins? heavy metal poisoning? after all, i did used chew on those little lead sinkers. every time i went fishing, i’d stick one of those in my mouth and chomp on it until i could sculpt it. thanks, dad, for not noticing that those suckers were disappearing… into my mouth (don’t worry, dad. this is for show. it’s okay that you neglected me in the front of the canoe). right. *heavy metal poisoning.

the toxic mold exposure one is a horrifying and consistently expensive and repetitive one, one whose ultimate solution, get out of the house, isn’t within my grasp. just when we thought we had it well managed, three weeks ago a flash flood got us and the mold began all over again. i have someone coming out to address the external issue, the fact that our house is at the bottom of a very large hill and for 44 years, water has been battering the hillside of the foundation. it did not help our situation any that i granted squatter’s rights to the fat groundhog who lives under our front deck. to be fair, she has lived there longer than me, so her untimely eviction (ie: murder), didn’t seem right. in hindsight, this may have been a massively expensive twitch of humanity. i probably should have had her killed… you can’t trap and release them in new york and while i’m a risk-taker, i’m not so much the law breaker. fine. i’m lazy. i didn’t want to deal with driving a wild animal in a cage up a mountain and figuring out how to let it out safely. i also didn’t want it to go into someone else’s yard. also, i thought that she would just be replaced with any one of the groundhogs that live in my neighbors’ yards and woods. so. you pick. lots of reasons. none of them great. if i eat animals, which i judiciously do, then i should be able to kill one, but i’m a hypocrite.

i just spent half a paragraph writing about a groundhog because i really don’t want to talk about mold. i’m getting estimates for a costly but permanent solution and that’s the end of that topic, for now.

i have a point. i do. i want wellness so badly that just having a little taste of it, two weeks of it, has me back at that place where i’m pointing the finger at everything to find the cause of my return to dis/ease. i hate this place because, the truth is, i can’t rule any of these things out. and i think that to most people, people who are not or have not suffered from multiple chronic illnesses from which endless mysteries stemmed, think it’s crazy when you talk this talk. i sound like a crazy-person and having been an actual crazy person, i feel uncomfortable sounding like a nutter.

i have plateaued a bit on my lyme and co-infection treatments. i’m overdue for an office visit but i don’t know that my system can handle another round yet. more on that in a different post. i’m wondering what it is that’s holding me back from a full recovery. i’m looking at the holistic picture and i don’t like what i see (yes, mold exposure is an elephant in the room. but it’s a matriarchy and she’s not in there alone. though i had a handful of emails discussing toxic mold, i’m saying this to myself, mostly). it’s important to note that the scientist in me is thoroughly annoyed with all of this. the scientist wants a peer reviewed case study ON ME in order to believe that more is happening than autoimmune and tick-borne diseases. so what am i going to do? get those b-dry people out to my house and start at square one. you know what else i’m gonna do? keep an eagle-eye out for cheap plane tickets to hawaii.

*i am currently actually doing things to treat this.

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One Response to “down the rabbit hole”

  1. Lyme Mom said

    Hi! It’s always so good to read your posts! So sorry you’re struggling with mold, not just past exposure but a current cluster &$@&!

    We are dealing with a flea infestation. Watching my grand dog but my daughter neglected to mention that she has been negligent with flea prevention. So being that I was a week late applying it to my dogs they too are infested. Not mold, but my mind is spinning. Does this mean that one of these may have lyme and get my daughter re-infected? Just now when she is finally recovering and seeing a glimpse of like without disease? So now we get to bomb the house and pray that the chemicals won’t trigger any negative reactions. So yes, even though it may sound crazy to those outside of the chronic illness world, in my life, the endless wormholes of worry are a constant.

    We went to Mexico for a week and my girl never felt better! 4 years ago before being diagnosed with TBD we went to Hawaii and she had to spend the entire week in the hotel room because the sun was too bright and the heat too much to handle. This time she was able to be in the sun all day, every day and swam like a fish in the ocean. I agree with you! Nothing more healing than the giant Epsom salt bath and the calming waves.

    Btw. We are in DC for an appointment on 10/11. Coming in on the 10th. Leaving the 12th. Maybe we could hook up again?

    Anyway, thanks for sharing your journey! As always I enjoy your writing, and its comforting to know that I’m not alone in my journey. Xoxoxoxo

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