September is not only mitochondrial disease awareness month, but it's also idiopathic intracranial hypertension awareness month. Tonight, I'm so moved by the ways this disease has actually changed my life. It may not be exactly how you think.
Intracranial Hypertension can cause so many life-altering issues with the body. When I was diagnosed in May, 2015, I had no idea how much hearing those words would change my life. I went into the doctor that Friday thinking I had a brain tumor. I cried the whole way after they told me I needed to come in to get my results in person. Cried hysterically. I was relieved when they told me there wasn't a tumor or cancer. I didn't understand enough about this condition I'd never even heard of to know it's a pseudotumor. Basically, I have a condition that has no cure, one that mimics a brain tumor. My symptoms are the same as many people who do physically have a tumor. The difference is you can't go in and remove it. There is a chance for remission, as I experienced in November and December of last year, but there is no ridding yourself of this disease once you have it. Seriously, what is it with me and chronic conditions with no cures? My biggest concern that Friday when I was told about my abnormal MRI was whether I was going to go blind since the doctor had already made an appointment with an eye doctor and was sending me there right away. When I said, "Am I going to go blind?"
He said, "Not today."
Anyway, after the battery of diagnostic tests confirming the diagnosis and ensuring I wasn't actively going blind, the first thing I was told was to lose weight. I'd tried dieting before, and I knew it was temporary. I never thought I had enough will power for a real lifestyle change. This disease forced me to do that. It was no longer a choice. My family took up clean eating, and so many of my fears about dying from health related illnesses have been relieved. I didn't realize how much it had been stressing me until I removed the cause of the worry. We're not perfect. We don't always eat clean. I had Steak & Shake tonight because we've been gone since 1pm, and there's no food at the house to cook. And even if there was, I didn't think I had the stamina to stand there and cook it. It was greasy and bad. But I'm super aware that I can't eat that way tomorrow, Thursday, or Friday. IIH made me start taking care of my body, becoming aware of what I put in it and how that affects me. I'm no longer addicted to sugar, and because of that, I no longer have crazy cravings.
The medication I've been taking to lower my intracranial pressure is known to cause teeth issues. I thought I'd broken one of my teeth a few weeks back. I was convinced, in fact, that my teeth were rotting out. I am ashamed to admit I'd not been to the dentist since we moved to Atlanta six years ago. I have a phobia where the dentist is concerned. When you think your teeth are rotting out, you have no choice but to get over that in a jiffy. But y'all, when I got to the dentist, they said, "You have fantastic teeth. It's just some plaque that broke off." She cleaned them, and I'm good for six months. More stress completely dissolved.
Vision disturbances and vision loss is one of the most serious symptoms. Aside from a couple of neurology appointments, for the past year, I've heard over and over how great my optic nerves look and that I was a lucky person with this disease. And even though I didn't think I was having disturbances, once my stent was placed, I realized just how much it was affecting my eyes. Y'all, I could feel my heart beating through my eyes. It felt like my eyeballs were going to pop out of the sockets sometimes. My lids twitched. Sometimes, I'd see weird stuff when I closed my eyes when I'd try to go to sleep. I'd end up just opening my eyes until I got so tired I couldn't hold them open any longer.
When we were in Charleston before my neurosurgery appointment, I remember telling Chad that between the whooshing in my ears and the eye stuff at night, I was miserable. I cried on a regular basis wondering if I'd ever know life as it was before this disease started making me feel like I had a brain tumor. Never mind the tears from the constant severe pain. I'm a strong person. I don't cry a lot. I'm tough. But this disease has been one of the most painful things I've ever endured, and it's constant. So tiring. I'd sleep days away, my family missing me and me them.
Thank goodness, the crazy eye symptoms went away IMMEDIATELY following the stent surgery as did the horrible pain behind my right ear that often propelled me into tears and hours upon hours of sleep to escape it all.
Tinnitis is one of the most common symptoms, and I've had this for a long time, but thought it was normal. I didn't know any different. It's my normal. One of my friends has been on my case about having my hearing checked, but to be honest, I was too afraid to go. Sound familiar? The reality is, if it's scary, I'm going to avoid confronting whatever it is for as long as possible. I'm a coward in a way. There's no way I'd allow my boys to behave the way I have about their bodies. For years, I'd been taking the easy way out, or so I thought.
Chad's also always on my case about the television being too loud. When I listen to music, I blast it. Sometimes, a lot, I have trouble understanding people. The more I thought about it, the more afraid I got that it was more than just ringing in my ears, but more hearing loss.
Today, I went to the ENT to look into the ringing in my ears. That's not subsided. Also, I'm having pressure build up on the left side.
He immediately had my hearing checked. I am not going to lie. I thought I was going to have a panic attack in that room listening and not being able to hear as the sounds got more and more quiet to me.
But in the end, she said, "Your hearing is perfectly fine." Perfectly fine. I breathed a sigh of relief and laughed. When we walked back into the room, Chad said, "Is she really deaf?"
The audiologist said, "No. She hears just fine."
Mr. Smarty Pants then said, "Well, does she listen just fine?"
The audiologist laughed and said, "She did both very well."
Some of my friends have this condition. They are not so fortunate, and that makes me feel bad. Like a survivors guilt in a way. How do I keep getting so lucky?
You know, I always like to try to find the silver lining in things. I firmly believe had I not been diagnosed with IIH, I would have continued to run myself into the ground. It's super common for caretakers to do this. We're notorious for neglecting ourselves. Over a year out from that Friday afternoon, it's clear to see that I was putting myself at so many unnecessary risks with my ignorance is bliss attitude. I am confident I wouldn't have taken care of myself the way I am now.
Things may not always be as good as they are today. It just hit me a few minutes ago that without this painful, debilitating condition, I wouldn't be as healthy as I am now. It's kind of weird, isn't it? That something so horrible could have actually made me better.
So, I'm feeling incredibly thankful. It almost feels like a miracle that, out of all the ways this disease could be ruining my life, I keep getting passes.
I don't want to, for a single second, take that for granted.
Friends, listen to your body. Take care of yourself. Go for your checkups. Don't wait for your incurable disease to force your hand. But most of all, please enjoy every waking minute that you have when you're healthy. You just never know when all that is going to flip on its head. Life is short. Life is precious. Enjoy it.