It’s time to tell you about my secret life. The one I’ve been hiding from the public, and most of my friends and family to be honest, for years now. I’ve decided to share it today for many reasons- pity is not one of them. I’ve advocated authenticity yet I hid behind a mirage like Oz. I’ve advocated finding passion yet I felt disheartened. I’ve advocated taking action yet I sat daily this summer motionless. To move forward, on my own or with you, I need to share my deeply personal journey- in the hopes that one other person relates, or that it helps another in their journey, or just to simply get all the thoughts and emotions that I’ve been holding inside for so long. Get ready, because anyone who knows me knows that this is about to turn into a novel, haha.
Almost every day, for over 4 years, I’ve lived on a boat. Not literally, although the idea of a house boat in Seattle does sound dreamy. But for over 4 years I’ve walked through life with the sensation of feeling as though I was standing on a boat. The sensation could also often be described as gently swaying in a rocking chair, or the jerking a car makes on the highway when the winds are whipping. During these last 4 years, this symptom was accompanied with a diagnosis of Ménière’s disease along with symptoms such as:
- ringing in my right ear
- fullness in my left
- blurred vision
- facial pressure around my eyes
- tired eyes
- vertigo spells
- numbness along the left side of my face from time to time
And for over 4 years now I’ve suffered with a misdiagnosed disorder.
I started to wonder whether the diagnosis I had was correct earlier this year when the treatment I was receiving seemed to not be working effectively. You see, there’s only one course of treatment for Ménière’s disease. But earlier this year, in late winter, I found myself lying in bed feeling dizzy more days than not. It became frustrating that the medicine wasn’t working as effectively anymore. So I headed to my ENT doctor for my bi-annual checkup and he increased my medication dose. But as winter turned into spring, I didn’t get any better. In fact, I got worse. Daily tasks like driving to get groceries, cleaning house, cooking dinner, or even getting a shower became extremely difficult. Over time, I’d became an expert at hiding the fact that I was practically bedridden. I mean, how can you explain to people that feeling dizzy can literally knock you off your feet?
If I’m being completely honest here, some days I couldn’t walk myself to the bathroom without holding onto the wall or help from my husband to get me in there. It seemed as though I could muscle up the strength to get to the events in life i absolutely could NOT miss, like funerals, weddings and baptisms, only to crash for days or weeks afterwards. The only answers my primary doctor and specialist could give me was that this is what Ménière’s disease can look like when it flares up. I was lying to myself. I was really sick and didn’t want to recognize it.
I remember walking into the kitchen late one night sometime back in June and most of the lights were off in the house. I was home alone and the light inside the fridge was the only thing illuminating the room. Without warning, a vertigo spell hit and I fell to the floor (voluntarily) to lay down and make it stop. As the fridge door sit open, and I lay on the floor, I began to sob… surely this isn’t what God had in store for me and the life he’s chosen for me to live. Something just isn’t right. And as I lay on that floor, I truly began to question whether I even had Ménière’s.
That night was quickly followed by a life-changing road trip for my family. At the end of June, Jamie and I, along with our good friend Katie, my parents, and my grandparents, caravanned out to Pittsburgh to surprise my sister Nicole and watch her and her boyfriend Bill get engaged to one another. What I wasn’t expecting was to find myself laying in the back seat of my truck 20 minutes after the proposal due to yet another vertigo attack. I remember my body purposely trying to fight the physical symptoms all afternoon long. I simply didn’t want to miss one of the most amazing moments of my sister’s life. But there I was, on the 10th floor of a building at a restaurant in the Mount Washington section of Pittsburgh, having a vertigo spell. I got down to the car and laid in the back seat. I cried out of frustration. I cried out of sadness. I cried out for help. I kicked and screamed and sobbed like a 2 year old having a tantrum all while on the phone with my dear friend Beth. And when I was done, I looked out the window and up at the building I was parked next to. There was a cross hanging on it. I was parked in front of a church. It was loud and clear- Faith was Required to get me through this. Faith and friends like Beth.
What most of you don’t know, is that just a few months prior to our Pittsburgh trip, I recommitted myself to my faith (after walking away from Christianity for 10 years) to becoming a better woman of God. But until this night, June 29, 2013 to be exact, I think I was still just “talking the talk”, and not really “walking the walk”. The cross on the building that night was a sign, clear as day to me. That in order to get through the difficult months ahead of me, Faith was Required. Not a half-hearted dedication to pray once a week or read the bible once a month. Rather a whole-hearted, active and daily devotion to building my relationship with Christ and living my life the way He wants me to according to His Word.
As we returned home from Pittsburgh, it was clear that my current physical condition was quickly deteriorating and was definitely misdiagnosed. I started searching for answers and with a bit of research I learned that dizziness/vertigo stems from 1 of 3 places: the ear, the eyes, or the brain. I also learned that there were a series of tests that should be performed to determine disorders such as Ménière’s disease (which my current ENT never did) and finally, the current medication I was on for Ménière’s could actually cause long-term balance problems in it’s own right. It was time to see some new doctors. I sat down with my sister, who’s a physician’s assistant and knows my case better than my primary doctor, and we put a plan of action together. Get a second opinion from an ear, nose and throat doctor and make a neurologist appointment. Here’s how the last 3 months have gone down:
Setting up doctors appointments and playing the waiting game filled this month. Appointments were made with the Capital Institute for Neurosciences and University of Penn Balance Center within the first few days of July- the following rest of the month was filled with angst, frustration, and hopelessness. By this point I’d stopped driving completely as I simply wasn’t comfortable behind the wheel (heck, I wasn’t comfortable walking a straight line down the street most of the time). I also was finding myself in bed 5 or so days a week as laying down is the only way to keep the dizziness at bay. It was a painfully long and lonely month and I was completely reliant on my husband for most of my daily needs. How I laid a single page of Denim+Grace Magazine from April through August still baffles me some days. They were definitely design cram sessions, for certain. Every day was the same and I slowly felt myself going insane from the monotony. At times, hopelessness felt like it was setting in.
The saving grace was when my dear friend Brandy came to visit for a few days towards the end of the month. We spend the entire 3 days she was here on the couch chatting the hours away about business, life, faith… everything. I’m so incredibly thankful that she was here break up the norm, bring some sanity to my life, and calm my nerves heading into the August appointments.
The 2nd day of the month arrived and my palms were sweaty. We were heading to the Capital Institute of Neurosciences and while I wanted so find answers so badly, and get some relief from my symptoms, here was not the place I wanted to find it. With that said, I knew I was in good hands. My appointment was with our family’s “Dr. House” of sorts, neurologist Dr. Shukla, who saved my mother’s life 5 or so years ago after a series of seizures she had. He still treats her today. Jamie and I had arrived at the hospital well prepped for our appointment with Dr. Shukla. Seeing as I wasn’t galavanting all over the place, I had plenty of time to go through my journal and write down all of my symptoms and what seems to trigger them most often. Hoping that something, anything, might trigger an answer for him.
An hour after arriving at the Dr’s office, we had our answer. I walked out of the office, down the long hallway and pressed the down button on the elevator. Tears began to well up in my eyes. I was relieved and angry at the same time… how had we missed migraines for over 4 years? As frustrated as I was, Jamie and I knew that our mornings and evenings of prayers had been answered and that God had led us to the doctors who would find the answers we so desperately needed.
The neurologist wanted to run some blood work as well as a lengthy MRI to rule out things like Multiple Sclerosis (and other neurological conditions that run in my family and display these symptoms), but he was certain I had complex migraines categorized as Basilar-type Migraines. He armed me with a new preventative medication, dietary changes, workout regimen and a 4 week follow up appointment. Oh, and he wanted me off that medication I’ve been on for 4 years that’s done nothing for me.
We cancelled our appointment at UPenn as per the neurologist’s instructions and started in on the new routine he set in place for me that day. Slowly, day by day, over the next few weeks, my symptoms started to subside and over the next four weeks I went from 2 migraines a week down to 1 a week. And thankfully, my MRI was clear showing no signs of MS or other neurological disorders. +1 for me.
It was follow up time at the neurologist. I was still having some trouble with my eyes focusing. At times they just felt blurry, and other times it felt almost as though they were focusing on different things. Usually at the end of a long day of work on the computer or when a migraine was on its way. Dr Shukla didn’t like what he was hearing, and although he didn’t see anything obvious with my eyes, he sent me off to the optometrist. It’s just as well because it was time for my annual exam anyway.
I went into my appointment this month with no concerns. My eye doctor has been well aware of my past series of symptoms and never had any concern in the past that it was eye related. What Dr. McGowan shared with me though was something that shook me to my core and caught me completely off guard. Evidently, I was born with a weak eye. One that crosses the other approximately 5 inches from my nose. One that doesn’t smoothly follow a finger from nose to nose. And one who’s muscles are currently extremely strained.
This is my shooting eye. Heck, it’s my eye in general. You only have two and you can’t replace them. Dr. McGowan was so genuinely concerned that he put in place several safeguards (or guidelines such as no contacts at all, no shooting with the right eye, no more than 4 hours on the computer per day, etc) to keep my eye from straining itself as much as possible. Every day that I sit on the computer, I might very well be setting myself up for a migraine. As when the strained muscles are done for the day, that’s it- either the eye will blur or “gray” out or a migraine will start to set in. And he referred me off to a specialist- who’s next opening for an appointment is in mid-November.
So, October means another month, another round of specialists. This has been my world for months. And although it feels like I’ve hit yet another roadblock in my recovery, I also must accept that this is all a part of the process to healing my body.
So that’s it- that’s my secret life. Some days I’m feel human and normal- some days I’m down and out for the count. It feels good not have to pretend to be perfect anymore. To be able to say, “I’m sick today friends, be back another day”. To be able to share my trials and triumphs as they continue to come along. This secret life of mine is actually what’s driven this blog back to life. Back in early August, things got overwhelming and I shut down my personal blog and shop- it was all too much to run when I’m a one-woman show running on 20% efficiency. I’m happy to say that most days, I feel like I’m back to 80%. And before I know it, I’ll be at 100%. But this will never be a distant memory for me, rather a constant reminder of how far I’ve come. I’m still in the thick of this- who knows how long I’ll be here.
What lies ahead for this space right here?
That has yet to be fully discovered. It’s a work in progress, just like me. But I know it’s meant to be honest, raw, pure, heartfelt and that faith IS indeed required. So that’s what it will always strive to be.