Well, hello world! This is my first blog that chronicles my life after diagnosis with Labyrinthitis in 2003. Most of you may be looking at that word, Labyrinthitis. It sounds so medical doesn’t it? It is, it was, and always will be. A medical term used to describe an inner ear condition that results in vertigo, balance issues, nausea, vomiting, fatigue, and much more. Those were my primary issues, and very common to the disorder.
Most people with Labyrinthitis wonder where on earth they ‘got’ it. For me, I know exactly when I was exposed to the virus. Just before Spring Break, I worked in the school system as a COTA (Certified Occupational Therapy Assistant), I sat cross-legged on the floor with my little ‘client’. The non-verbal child had multiple issues, but I was working on Sensory System issues. The sun shone brightly into the classroom, and I noticed the child’s face was scrunching up. I said (getting closer), “Now what’s this little face all about? What are you trying to tell me”? The next thing I knew, a huge sneeze came out! The spray went all over my face but worst of all, it went into my mouth! I reacted as anyone would. I did a quick ‘hand-off’ with a classroom aide, jumped up, ran to the sink and began washing my face and mouth with the antibacterial soap! Yes, I did! Washed my tongue with antibacterial soap! I swished it all over my mouth and did it do anything?
By the time I finished my work day, I was running a fever and felt horrible! I crawled into bed as soon as I got home and thought to myself, “It’s Spring Break. Surely I’ll be well in seven days”. That virus had other plans, though. About one week after ‘that’ sneeze, I was asleep, and I turned over in bed. Whoa! What was that feeling? Oh my gosh, my head was spinning and my eyes felt like they were ‘pulsing’ in a weird rhythmic way. I lay there until it stopped, then I sat on the side of my bed before going to the bathroom. Yes, I should have woke my husband then, maybe turned on a light, or maybe even asked for help, but I didn’t. Next thing I know, I’m on the floor, in the dark, with my husband snoring away. I had to call his name several times to awaken him. Poor thing woke up so confused, “Margaret, where are you”? “I’m on the floor, Mike”! And of course, he said, “What are you doing down there”? And of course, I said, “I’ve fallen and I can’t get up”! I kid you not! He helped me to a sitting position, and my head started the spinning…then nausea hit…followed by vomiting. I spent the rest of the night with my head in a trash can throwing up. Horrible. Just horrible. There was no way I could go to work the next day (even after a week holiday), I had to call in sick. I was in bed, just wallering around, going back and forth between laying still, to wallering. It was not a pretty sight, I’m sure!
As I headed into week two of this mess, I went to my regular Physician. Diagnosis: A viral infection. Simple enough, I’d just have to wait it out. Weeks turned into a month. I was trying to work, but having so many Vertigo episodes, I’d put my back against the wall, slide slowly down, and sit. The walls became my BFF! That’s when I came up with the saying, “Don’t mind me, I’m just holding the wall up”. After a few months, I finally got into a local ENT and had countless tests. I had the dreaded three ‘V’s’: virus-vertigo-vomiting! Again with the virus, okay it’s a virus, AND? He was able to say it was in my inner ear. My INNER EAR? You mean it went to my BRAIN? He was a Board Certified ENT, but very ‘old school’ in his treatment and willingness for referral onto a Neuro ENT in Dallas. So I floundered one whole year, being ‘treated’ with Scopolamine patches for nausea (I used these for two years before I had an allergic reaction to the glue, go figure!), Meclizine, Valtrex antiviral medication. The list became endless and side effects of the medicines awful.
I eventually (reluctantly) took a formal Leave of Absence, but not before breaking my tailbone three times, my ankles twice, my kneecap and Cuboid (on opposite legs, of course). It was dangerous to walk! Since I worked at a Pediatric Rehab Facility, my co-workers cast my legs, Orthotists who served our Facility made braces for me. I had access to all types of adaptive equipment, but I could stay ‘erect’ for limited amounts of time before vertigo attacked. I was no longer living life. I felt like a prisoner in my own life, and the thought of a virus still being inside my brain after all this time made me feel insane! I had a MELTDOWN with the ENT, “Get me into that *&#! Specialist in Dallas!”, while crying hysterically. I got the referral. This new doctor would become the ‘man who saved my life’ and the BEST Physician I know. My appointment date? December 16th, 2003, my birthday! Oh, what a birthday it would be…