The Missing Puzzle Piece

Well, well, well, back again! You just couuuldn’t stay away, could you?! (No, but seriously, thank you… it’s, like, really nice of you to come back and keep reading.)

I just wanted to thank everyone for taking the time to go through that list I sent and even reaching out afterwards with questions. You made me feel comfortable enough to share it with you all, and that meant a lot.

So, for our Oreo segment— (Yeah, that’s right, there’s an Oreo segment now, because he is technically one of my doctors. My insurance isn’t great.) For those wondering, his birthday was a hit and turns out he looks… incredible in a tux.

Unfortunately, he was quite sick the other day after eating a puzzle piece…

…which begs the question- what if he is not, in fact, a genius? More on that in my next newsletter.

Now, for my medical update:

I am excited to share some good news for the first time in months! My vision has started improving and stabilizing, and so has my eye pressure. Better vision is, of course, a big relief, but stable pressure means I am less likely to have permanent optic nerve damage, and that the valves they put in could possibly be working a little bit?! Here I am after my doctor’s technician complimented my vision AND my pants.

I was also told I could finally stop taking prednisone, which is an awful steroid medication I had been on for a year and a half and it was making me, quite frankly, lose my mind. It just had so many side effects I stopped feeling like myself, and then was on it for so long, I forgot what “myself” even felt like. It was scary! So, if in the past year and a half we talked about something completely innocuous, like karaoke or Florence Pugh and I burst into tears? That was probably because I’ve been on a crazy amount of steroids for my eyes.

A few days ago, I got my haircut for the first time in months, and started crying. The thing was, this hairdresser actually did a nice job. I’ve had so many haircuts where I should have been crying (just ask for photos from most haircuts ages 5- 20.) But when she asked what was wrong, I couldn’t tell her. I really was so happy that I felt well enough to get my haircut at all. But a part of me did feel emotional, to do this nice thing for myself and look a little put together after feeling like a hospital gremlin all summer.

So, back to the prednisone - granted, it is awesome at bringing down inflammation, but also happens to cause: insomnia, bruising, depression, anxiety, irritability. It also damages your hair, swells up your face, can give you stomach ulcers, osteoporosis and bone loss, and more. But now I’m finally fucking off of it and THRILLED. This is the worst medication I have been on in terms of side effects, and I have been counting down the days until I could be done with it. Did I cry from joy when I was done with it? You bet I did!

Now the main thing left to figure out is still the valve they put in for my last surgery. I went to get a second opinion, and they think it’s too soon to tell if I need another surgery to fix it until I recover more. There’s an imaging test they can do to examine the valve by using a probe, but they’re too scared to do even that, so I’ll need to wait another month for them to make a decision. They told me to just “be patient,” as if that isn’t what I’ve been doing for the past three months while they figure this out, but sure, why not!

Ultimately, I would say I’m better than I was before, but not feeling 100%. I don’t have a ton of energy, and still have consistent eye pain/migraines caused by my most recent surgery, just less intense than before due to finding a better medication combo that actually works. Also, most nights I have nightmares about my surgeries, or my anesthesia not working again, or being back in the ER, so I’m kind of terrified to go to bed lately, which is very fun! To help with that I’ve been trying to watch purely entertaining/ silly movies before bed, so if you have some recs, send ‘em my way! (Just nothing that is text heavy, please.)

But despite the migraines and nightmares, it’s all a huge improvement. Three weeks ago, I was in a wheelchair because I was too weak to stand, and I almost lost my vision in my left eye for good. Now I can go for walks around the block. I can see better, and feel myself getting stronger. However, I know with uveitis, and chronic illness in general, it’s never over. It’s a lifelong condition, which is why I’m so terrified to be hopeful. Not for my lack of optimism, but because of the nature of the disease.

Just when you think you’re better and feeling happy and safe again, something else will inevitably go wrong. But there will be good moments, and days or weeks or months where you will be doing better, and this feels like one of those moments. In these short periods when things are looking up, I try to be as grateful as I can that I’m okay, and enjoy the fact that I’m able to walk and see and talk on the phone with friends.

In the past, I wasn’t able to enjoy these good periods, not really. After my Retisert implant surgeries this past November and December, my uveitis was in remission for the first time in my life. I wasn’t seeing floaters anymore. My doctors all told me I looked great, and a part of me didn’t believe them. I wasn’t used to getting good news.

When I was done recovering by February, I was thrilled not to be going to the doctor every single week and did everything I wasn’t able to do for so many months. I went out dancing and traveled and tried dating again and kept myself busy, but my mind was always elsewhere. I kept waiting for the bad news to come, for my eyes to get worse, and despite doing all these fun things, I was more depressed than I had ever been. And I felt so guilty about it, because my eyes were finally okay! I was supposed to be happy.

But when my health did get worse in early June, I didn’t feel any better that I was proven right. I was just disappointed I wasted all that time not enjoying every second in a real, meaningful way. Shortly after, I started a meditation course led by Peter Fernando, a monk from New Zealand who has a chronic illness himself. I read his book, “Finding Freedom in Illness,” and was immediately struck by this passage:

“If your physical condition improves, you will still be divided in your heart and you won’t be able to taste the deeper kind of ease and wellness that comes through resting in openness to the continually changing landscape of the present moment.”

It felt like the first time the mixed emotions I experienced after my surgeries were finally addressed, and helped me start to make sense of it. I realized I had suffered from a divided heart, and half of it was stuck in the future, waiting for the worst to happen, rather than rooted in the present, where I could appreciate what I already had. I don’t want to do that again.

I guess I’m writing this all out both in the hopes that this sentiment rings true whether you have a chronic illness or not, but also to hold myself accountable.

I want to learn how to live a fulfilling, happy life despite the constant setbacks that come with a chronic illness that will always knock you back down, and I’m not sure what the missing puzzle piece is in all this. Maybe it’s to hope for the best, and be present when things are good, and fight really fucking hard when things aren’t. Maybe the piece is buried far away in Oreo’s stomach. Either way, thank you for being here along the way as I try to find it.

Thank you for reading. I really should go get Oreo to the vet now.

Love,

Julia