Unpredictability
I have been living with PET since September 2018. I went in for a balloon dilation procedure for chronic ETD, and I came out of it with PET. I knew going into the surgery that there was a 5% risk of PET, but considering I had just spent 9 months getting over an ear infection that turned into MRSA (and 19 rounds of antibiotics later), I didn’t have much choice and made the best decision with the info I had (I’ll share more about my journey in another blog). PET has been part of my daily life ever since, and it’s caused the last 8 years of my life to turn upside down.
In addition, I have a few other ear conditions that exacerbate my PET - including bilateral Superior Canal Dehiscence Syndrome (SCDS) and Vestibular Migraines (VM). Today, I am on day 18 of the worst VM attack to date - I am homebound and essentially unable to move without being dizzy - I haven’t driven a car in almost 3 weeks. I have moments where it becomes hard to talk. I can’t find my words. My face and tongue tingle. My face gets flushed with warmth. It’s impossible to focus.
Very early on in my PET/SCDS treatment with Dr Dean, we learned that my VMs are triggered by the patulous tube. The more open the tube is, the worse my migraines will be. And oftentimes, the treatments for the VM’s cause the PET to be worse. It feels like we are always on a very delicate teeter totter - treating one condition can cause another to get worse. It’s a (very) bad cycle.
Some days are fine, and some are hard. Some days are VERY hard.
I think that's one of the things that makes PET, and other ear conditions like this, so dang difficult to manage - the ear, nose, and throat are totally interconnected, and the balance of homeostasis is so very delicate. When your body is in fight or flight mode for so long, the smallest trigger can set it over the edge and put you down for the count - sometimes for days or weeks at a time
This makes life unpredictable. I gave up years ago trying to plan things…. never have people over for dinner because it's hard to kick everyone out if you start to feel like crap. I don’t plan girls’ nights because the noise is too much. I don’t join any clubs because I’m just not reliable enough to commit. Is this how I want the rest of my life to go? I’m only 48 - I should have a lot of fun left in my life, but until we can get these dang ears under control, there are times it feels hopeless.
But then I think back to the good days:
A few weeks ago, I ran 3mi. I hadn’t done that since September 2024 (yes, I remember the day well!). It felt soooo good as I used to love to run, and losing the ability to do it has hit me hard - physically and mentally. I dream of being able to run regularly again.
I think about being able to go out on the ramp of our local airport last fall when I watched my 16-year-old son do his first solo flight during his Private Pilot Licence course. It was both terrifying and so exciting to see my child up in the air. I want to be able to travel with him in the years to come as he lives out his dream of being a pilot.
I think about the long walks on the weekends with my husband and dog. Its our time to just enjoy where we live, get outside, be active and catch up.
Proud Mama
Remembering the good days helps to remind me that the bad days don’t last forever. The migraine will lift, and the PET will settle. While my life will never be what it was before that fateful day in 2018, I have learned firsthand, and much younger than most, that you have to cherish the good days when you have them:
Stop and smell the budding spring trees.
Enjoy the beautiful sunset.
Sunset in my neighborhood on some random night
Hug your kids.
And most important of all - pet ALL the dogs on your walk (cause dogs are better than most people lol).
My dog Joy living a carefree life on the beach
To everyone who reads this who has PET - whether you get it for a few minutes a day and it drives you nuts, to those with it 24/7 just trying to get through the day with some sanity - I am there with you. I am fighting with you. I am fighting for you. We will find a cure.
Stephie
