further down the rabbit hole…

It has been an interesting few weeks – the Cubs finally won the World Series, Donald Trump will be President, marijuana is now legal in California, and I have two “new diagnoses”, although I use those terms loosely, as one is not really new, and one is not really a diagnosis.

tweet from @tha_linds
i’m oddly proud of it.

For the one that is not actually a diagnosis”: My doctor’s assumption of being peri-menopausal was correct. What. the. f*ck. I’m in my mid (okay, late) 30’s, so this comes as an unexpected shock. I thought I had another 8-10 years. Blood tests showed that my lutenizing hormone (LH) levels, follicle-stimulating hormone (FSH), estrogen and testosterone are all off. Way off. I may also have polycystic ovarian syndrome (PCOS), because my LH is very high, and I have a high LH/FSH ratio. However, my testosterone level is low, which I guess is not typical for PCOS. As you might expect, there’s a huge emotional component to what this all means for me, as a woman. More on that in a future post. I started bioidentical hormone replacement therapy (HRT) last week. Friends, if you have ever taken HRT and are willing to (confidentially, of course) share your experience, please email me at lindsay@dysautonomiac.com.

For the one that is not actually “new”: supraventricular tachycardia (SVT). It was first discovered over 6 years ago, before my POTS diagnosis, during a 2 week holter monitor test. The doctor never said anything about it, and after the POTS diagnosis, I just assumed it was the same thing. My POTS cardiologist just confirmed it’s not. For me, it happens most often in the middle of the night, usually between 1-5 am. Suddenly I understand why I wake up often throughout the night. In SVT, the heart’s electrical system doesn’t work right, causing the heart to suddenly beat quickly for no reason. It’s different from POTS in that it’s not related to orthostatics (whether I’m standing), and it isn’t a gradual increase. With POTS, my heart rate starts at about 58 when I’m sitting, then as I stand it goes (very quickly) to 68, then maybe 84, then 97, then 105 (or higher), all within a matter of seconds. With SVT, it jumps from 58 to 105 (or higher) almost instantly.

Because I already take a beta blocker, I don’t need any new treatment for the SVT. These diagnoses may not seem like a big deal, and honestly, they’re probably not. I’m not worried about either. What worries me is how much deeper down the rabbit hole each new diagnosis takes me.

When you’re first diagnosed with a chronic illness, it feels like you stumbled down into a long, dark cave. At first it’s overwhelming, disorienting. You don’t even know which way is up. Eventually your eyes adjust enough to see the silhouette of your limbs, and you begin to walk, you hope, back towards the entrance. For a while you flounder in the dark, grasping at the walls to guide your way. You hear voices from the people on the surface and assume they must be close, but you can’t see the light.

You walk for what feels like miles in total darkness. Alone. Cold. Scared. It feels like the structure of the cave changes – the passage narrows, the walls close in, the pathway slopes – but you can’t be certain surrounded by blackness. Finally you think you see the smallest glimpse of light. You burst toward it at full speed, clawing at anything in your way, digging your nails into the earth to propel you forward. You’re tired. You just want to let the darkness claim you, but you know if you could just feel the warmth of that light, let it consume you, you could live in the light forever.

But with each new diagnosis, the ground beneath you gives, and you stumble deeper into oblivion. You continue in this manner for weeks. Months. Years. Weaving through the maze in the darkness. Occasionally you find a dim lantern or a matchbook that provides small beams of temporary light. But the light only helps to illuminate the hopelessness of the situation, making you feel more trapped, until one day you finally realize a large boulder has rolled in front of the entrance. You’re never getting out of the cave.

the moonSometimes you find part of the cave where the ground above you has given way, and you can feel the warmth of the sun. You hear the laughter of the people above, see them stepping over the hole and going about their life. In the beginning, they shout down to you regularly, “How are you doing down there? When will you get out?” You respond that there is no way out, you’re trapped in the cave. They shout back that you need a paperclip, or some marmalade, or a bible, as if those would magically lift you out of the hole.

After a while, the people on the surface stop shouting down. You’re less lonely, because you start to meet other people in the cave. You gather together to keep each other warm and to huddle around the small lantern someone found, forming your own community of cave dwellers. Together you long for life on the surface and dream about the sound of the wind rustling the trees, or the feel of warm sand beneath your feet. For a while, those thoughts invade your dreams. But eventually, you begin to forget what it was like on the surface and your few memories begin to feel like a vague recollection of something you once saw on t.v.

You begin to respect the cave, appreciate it’s narrow paths and rocky terrain. You hardly notice the bitter cold anymore. But each night, you and the other cave dwelllers lie beneath the small hole in the cave, staring up with astonishment into the star-filled sky that shines through, wondering why everyone on the surface isn’t doing the exact same thing when the view is so much better up there.

“There is a crack in everything, that’s how the light gets in.” – Leonard Cohen (RIP)

Smell ya later.
– Linds

4 Replies to “further down the rabbit hole…”

  1. I love your analogy of the tunnel – beautifully written and so true! Shocked but to be honest not surprised at the peri-menopause diagnosis – I think it starts way earlier than doctors realize for many women (my best mate is 40 and I’m sure has been in peri for two years now). If it’s any consolation I’m still at it 5 years after diagnosis with not even a skipped period yet and it’s still possible to get pregnant in peri-menopause, so I really hope your dreams of a family aren’t squashed *hugs*.

    Sorry you have yet more crap-o-la to deal with 🙁 I was at the doctors last week and was diagnosed with yet another disease to add to the 5 I already have – chronic illness, the gift that just keeps on giving 😉

    Jak x

    1. i’m not at all happy you’re going through this, but i’m so grateful that i have you to look to for advice on mast cell, dealing with aging parents, and now perimenopause.

      and of course, adorable dogs.

  2. Thank you so much. This is exactly what chronic illness is like – you are a gifted writer. Thank you again (and again).

    1. thank you so much for your nice words!

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