17bfb1564fa727cf1c43fc5f9f17e0afFor days I’ve been trying to wrap my brain around what happened.

How did I go from having a functional flare to immobile in my hospital bed after weeks and weeks of barely seeing my own bedroom? How did I go from being able to see my body so abstractly to feeling like I was suddenly walking (or for the most part laying) in a bag of organs and bones? I hardly felt like I was in my body at all.

It’s like a snowball that just grew out of control.

Last Wednesday I went in for a simple surgery to help facilitate the rest of this medical process. My veins had collapsed entirely. This simple implant would help me get the medicine, vitamins and water I needed to keep going–to keep moving forward towards our plans to see specialists at the University of Miami. For more tests. For more surgeries.

During surgery my lung collapsed and as I recovered later that night, wide awake, they had to insert a chest tube to re-inflate it. It was one of the most terrifying moments of my life. Not because, after a lifetime of having procedures that I was necessarily terrified of having a giant tube shoved between my ribs and into my lung (which, don’t get be wrong, I was totally fucking terrified,) but because my surgeon had looked me square in the eye earlier that week during our consult and said, “This happens sometimes–but it won’t happen to you.”

For me, it was one of those moments in life where you just think…


No one can be sure what the outcome might be.

And when it comes–we’ll just have to turn over on our sides, take a deep breath and hope that whoever is running in the show knows what they’re doing over there.

I’m not, like, angry with my surgeon about the lung collapse. I don’t think he intentionally or  even ineptly set out to do a surgery that would collapse my lung. I think it’s just part of the risk you take when you go down this road.

And suddenly I felt like I was looking up through a very deep hole in the ground and I could barely see where I was going anymore. Suddenly I felt the wear of the weeks of pain killers and infiltrated IV’s. I looked in the mirror and saw the black band of bruises around my waist from shots of blood thinners and anti-convulsants. I don’t think I’ve ever looked older in my life.

With chronic illness leading the way of my life I’ve consented to things I don’t think I could have ever imagined consenting to just a few years ago. Pain absolutely changes you. It comes first, before everything and I feel like I’ve been swallowed up by it.

I really need a break, so I’m taking one.

And I know I can’t take a break from my pain or being in my body. I just need a minute to regroup here. To rethink how I’m eating and what medications I’m taking and how to relax. I just really need to feel, for sure, that this is as bad as it has to be before really diving into the unknown. And surgeries like these are truly the unknown.

I’m going to try the things I’ve tried before and maybe have never tried, because I think if I take one more step forward I’m going to find myself consenting to an irreversible surgery. And I don’t know if risking the quality of life that I do have is worth the potential that I could endure more than a small, collapsed lung.

So I’m taking some time to regroup. Standby.


And in the meantime, please give me a break about when and where I’m getting married. It’s a little hard to run a major life event from a hospital bed and I can only heal my body, repair my sanity and change course so much in just a few short days. Don’t worry. We’ll get there. Seriously guys, I just need to make sure I still have an actual body to put in the white dress.

Here's hoping.

Here’s hoping.






3 thoughts on “Risk.

  1. Kaylee

    Hey Ilana,

    I just discovered your blog the other day, and have been reading it like crazy. I absolutely LOVE your razor-sharp sense of humour and your strength. It’s really helped me out as I’ve tried (read: failed) to navigate dealing with a flare of my chronic illness with the demands of my seriously stressful job. I’m in my 20s too. It’s unbelievable how hard it is to face down choices like the ones we have to make when we are supposed to be working, and planning weddings, etc! No one prepares you for the complete uncertainty. But I just wanted you to know that I think you are amazing and you have really helped me feel more sane lately, as opposed to how I typically feel like I’m orbiting around earth on a completely different plane of existence from the people around me. So I wanted to say that I hope you get to take the time you need to regroup. I’m sorry you are going through such utter hell. I hope things ease up and you get a chance to feel better soon xxxx

  2. Hi Ilana,

    I recently found your blog and have been reading so much of your content. I’ve never found anything this relatable to my own life! I was diagnosed with a chronic kidney disease my freshman year of college, so I’ve had a wild ride as well. I can’t say I’ve ever had a collapsed lung, but being in and out of the hospital IS pretty shitty. Hang in there! What you’re doing is amazing and I commend you for your willingness to share your journey with the world. I can’t wait to see more of your content and share it with my friends that are struggling with disease as well 🙂

  3. […] The port was good for me, because I know for Dysautonomia it’s what I need. It also exposed the dark underbelly of being a voiceless patient. I’d been going into surgery after surgery, on medication after medication in emergency mode for so long. I talked about the new fear of taking risks with my body. […]

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