Adventures in Dizzyland Part Five

Today is Friday and the sun is shining!! The beautiful snow glistens in my yard and no one got hurt from these horrible storms this week! I have a lot to be thankful for. I'm also grateful I was able to do yoga last night with my awesome sister-in-laws; I come home, take a hot bath, crawl into bed and crash the whole night; it's vunderful!!

Anyway, here is part five on my continuing adventures in Dizzyland!

I, of course didn't want to hear it. I wanted to pity myself. I wanted to stew in my angry juices, let them boil and then simmer, until I was ready to face them. I wanted my dad. Now, anyone knows, your spouse, friends, family and mother are wonderful, but there’s just something about Dad that makes it all OK. He didn't have answers, only a hug and “It will all work out.” I felt better already. Soon after, I started finding natural solutions to my problem, or at least the symptoms. I tried motion sickness medicine, essential oils, aromatherapy, exercises, you name it. When those failed to work, I tried physical therapy. Maybe I could retrain my brain to deal with the balance disorder. That helped, but made me dizzier, as it was supposed to do, in order to retrain it. I did walking exercises, closing my eyes, walking forward, with my eyes open, looking side to side and up and down. Whew! In the course of my research, I thought it might have to do with my jaw. It was off and had been for years. Maybe it was putting pressure on the ears causing the imbalance. I went to a TMJ dentist. He took x-rays and said that my jaw bone, on both sides, was deteriorating and pushing on the ears because of how off they were. I needed an appliance to wear at night that would re-grow the bone and take the pressure off the ears. Sounded quite reasonable, so forked over the money and started wearing it.

Needless to say, it didn't cure the problem and only made things worse; except for it did re-grow back the bone, but changed my bite big-time! Back to square one. By this time, it was going on two years and I was getting used to this constant off-balance feeling. But, I was not giving up.

Chapter Three
What Now?

 

Just as I was getting used to the idea of having the balance problem, another symptom reared its ugly head—tinkling, or as the experts call it, tinnitus. I felt it in my left ear, almost like a high tinkling sound, akin to chimes outside your window. It drove me nuts! Was I having a stroke? Was I losing my hearing, or just hearing things, losing my mind? No, it was another pesky symptom of a balance disorder. In fact, in all my research and from being told by doctors, balance disorders make up a whole host of symptoms. I counted close to thirty of them. Not only that, but your muscles, eyes, and ears all make up your balance system. Who knew? I would learn quite a lot about the amazing labyrinth that makes up your balance and how seemingly small things can throw it completely out of whack. 

Not only did I hear that sound in my head constantly, I also started noticing tingling in my forehead. The kind of tingling that makes you feel like there’s not enough blood going to it, and that at anytime, you will keel over into nothingness. I ended up scratching my head numerous times a day to get feeling back into it. My legs also shook and felt like they would collapse, and I would go down like Gumby, after a few too many cartwheels.  I felt like I was falling apart. Of course that triggered the panic feelings, which fed off the fear, which continued to feed the panic, and well, you know. My fears were not just about me, but about my family. Would my children resent me for not taking them to the mall? Not go bike riding, or just a simple walk down the street? What about my husband? Would he hate me for not going hiking with him or go to dinner at a restaurant? Would I ever be able to get on a plane again? 

Two years ago, my husband and went on a Mediterranean cruise to Greece and Italy and I was scared to death! What happened if I panicked in a plane cruising at thirty thousand feet in the air? Or become so dizzy and sick, I couldn't stand up? I slowly prepared myself, such as walking 4-5 times a week. It did get better. I had a great time; I didn't panic. Yeah, I was a little dizzy, but Dramamine took care of that. I got to see some beautiful ancient relics and buildings, such as the Colosseum in Rome, Vatican City, Pompeii, The Parthenon, etc...WOW! I will remember that for a lifetime!

I still have the real fear of what might happen in the future, when I have grandchildren, and it haunts me daily. Will I be able to hold them without feeling dizzy? Or drive them to the movies? My son wants to be a pilot and take me and his dad all over. Can I do that with this balance disorder?

Adventures in Dizzyland: Part Four

It's still snowing and, even though it's beautiful, I want spring! I am sure the snow plows are loving this weather, as well as the skiers, snowboarders, and other winter-loving enthusiasts. For me, I want warmth!!

Alas, come summer, I will be in sunny Florida on a Disney cruise with my family, so I will look forward to that!

Here is part four of Adventures in Dizzyland...

I came home, took my antibiotic faithfully, and viola! A week later, no difference. Went back, doc said the ear was nice and pink, but there was a little fluid still in there. It would take time, he said, to drain. Ok, I would wait patiently, but three months later, I was patient enough. This time, the fluid was gone, but I was still off-balance and dizzy. Why? I demanded. He didn’t know and sent me for an MRI, just to check for a tumor in my brain. Great! Just what I wanted to hear. When that came back negative, he sent me to an ENT. Test after test came back negative for anything and everything related to the ear. Sent me for another MRI to check my ears. Nothing to report there. This was starting to weigh heavily on my mind, not to mention my wallet. And of course, I couldn’t drive there, so my mother, father, when he could, mother-in-law, and husband became my chauffeurs. Month after month, test after test, and I was ready to pull my hair out, along with my ears! Maybe that would solve it. Uh, no, then I would have two problems.

Back to the drawing board—the internet. Let’s see, I could have Meniere’s Disease, and inner ear disorder, but is characterized as someone who falls down and vomits all the time. Not me, I hadn’t vomited once. BPPV? Benign Paroxysmal Positional Vertigo…hmmm…could be…oh wait, ENT already tested for that—negative. What about Vestibular Neuronitis, inflammation of the vestibular nerve, perilymph fistula, a leakage of inner ear fluid into the middle ear. Ok, those are plausible. Of course, not one of these could be diagnosed without first seeing a hearing and balance specialist, thirty minutes away. More time off of work for my poor hubby, who by this time, is so tired of the millions of doctor’s visits and money being poured out in rivers, he could throw his own tantrum. Of course, I had to get to the bottom of this. I couldn’t be like this forever, could I?

I had, of course, researched what a balance specialist does, and it didn't sound pretty or fun. Nevertheless, I braced myself. How bad could it really be? Plus, it would be worth it to find out what’s wrong with me. The day of the appointment, I dressed casually, as if I was going to see a movie with a dear friend. My appointment was for 8:30, but my husband couldn’t get time off, so my mother drove. After parking underground, we walked inside the huge building that housed all kinds of medical specialties. Thank Heavens the Balance center was on the first floor (someone knew I didn’t want to be tortured) because my height phobia had jumped through the roof with this balance problem. We waited, me filling out a million forms, giving them everything from how long I had the problem to my pain scale, which was 0 for a balance problem, unless you count the time I fell back onto my then 11-year old son at church, oh and possibly when I bumped into the wall in the middle of the night, because I couldn’t see or walk straight.

A while later, we finally went in. The first thing was to check my hearing—been there, done that, twice already—but had to do a third time for their records. Hearing fine, except for a few high-pitch noises that should have sent me through the roof, apparently. After my hearing appendages popped back into place from the heavy, suck-your-ears-back-into-your-head phones were gone, they took me into another room. This is where it not only got very weird, but very nauseating. 

First, I had to put on these funky, not-so-cool-driving-with-the-top-down glasses that sucked into my face. A red dot appeared, and oh goody, I get to follow it, back and forth, back and forth—whoa! When did the room start spinning? Of course, on their computer, my eyes looked like huge saucers, as they watched them go back and forth. They wanted to see if I had nystagmus—if my eyes fluttered when the motion stopped, indicating an inner-ear problem. Very slight, he said, but nothing to indicate a serious problem. Next, I had to walk up and down the hall, just to check my gait, which I looked drunk while I did it. I had to close my eyes and stand on one foot, almost fell over, and a bunch of other tests. 

The last thing was to have a caloric test, and let me tell you right now, it is the worst, out-of-control feeling you have ever encountered. They first put cold water in your ear, which simulates dizziness, while wearing the funky glasses and closing your eyes and counting back from forty, or saying whatever they wanted you to say, so they could see what your eyes were doing, while you feel like puking your guts out. Then, they do the other side! After that, I lay on the table, on my side, not moving a muscle! I just wanted the world to stop spinning. How embarrassing, even though the specialist said he sees it all the time. Yeah, I bet!

After sitting there waiting for those results, I just wanted to go home and crash. Soon, the specialist comes back in and says the tests are inconclusive. WHAT?! Meaning, you need to repeat them at a later date. I wanted to reach out and strangle the life out of him, not really, but I had to endure this torture again?! Not cool! On the ride home, I cried. I was so tired, so sick, so sick and tired of feeling this way; I wanted to climb out of my body and say, “See ya!” At home, I tried to remain calm, but when my husband came home, he got the brunt of it, poor guy.

“Why me? What did I do to deserve this?”

“Nothing, but then nobody does anything to deserve what challenges they’ve been given, they just have to work through them, with the Lord’s help,” my wise husband said.

Adventures in Dizzyland Part Three

It's Tuesday and the snow is coming down in a flurry of excitement. The roads this morning are a mess and I am shaking my head wondering why a snow day wasn't declared for our region. We should have plenty of extra snow days from years previous to use for this morning. Alas, I am glad I'm back home safe in my warm home, and thank The Lord for that. The snow is always pretty when it blankets the earth, so as long as I'm not, or anyone I know, driving in it!

Here is part three of My Adventures in Dizzyland. Hopefully, you are enjoying it so far. Leave me a comment if you're so inclined.

Adventures in Dizzyland Continued...

Before any of this happened though and I was still unsure of my driving ability, I stopped driving, except for taking my kids to and from school and to the local store. Why chance it, right? I did teach my daughter to steer when she was thirteen and drive while she was fourteen, just in case she had to take the wheel. The first time I had a panic attack on the road, I was by myself. I was tired of being stuck home, not being able to drive, and the ironic part was that I was driving to a natural medicine clinic that I thought might be able to shed some light on this mysterious illness I had. Well, I was lost to begin with. I had no clue how to get to the place and the dizzy spells were getting worse. The familiar panic starting welling inside me (and yes, I had had many panic attacks in the past not related) and I knew what would happen. My heart was beating out of my chest, my hands became cold and sweaty, a feeling like I would die right then and there was so overwhelming, I began to hyperventilate, which made the dizziness worse. I managed to pull into a gas station and sit there, trying to get a hold of myself, while people stared at me as if I might go insane. I had to call my mother, who lived just up the road, to come get my husband from work, who was thankfully only minutes away. We only had one car. Both of them showed up about fifteen minutes later, and by that time, I had calmed enough that I felt like I would live. My husband drove me home and went back to work, but by then, all I could do was sleep. I felt like I had just run a marathon. It wiped me out.

After that terrifying experience, I relegated myself to my home. I became agoraphobic, afraid to leave my house. I swore I would never go through that again. Well, because of that vow, I made myself a prison—within the walls of my own home. This was not the life I wanted to lead, which then propelled me to becoming a research maniac.

Chapter Two
Information Overload

Let me tell you, the internet is a wonderful tool, but it can also be the devil. What I mean to say by that is we humans are curious people, even downright obsessive when it comes to our health. Any abnormal bodily change was an urgent alarm in my head to find out what I “had.” I was, I admit, a hypochondriac. It started in childhood. I was afraid of everything! I was afraid of the wind, thought it would blow the house down, (Three little Pigs must have traumatized me or something) afraid of thunder, (not sure why) and lightning, thinking it would split our house in two (was told a relative’s house was struck by lightning, therefore, ours was bound to as well) and afraid of every spider there was. Didn't help that as a child I was bit by a wolf spider that sent me to the E.R. in the middle of the night, with a fever over 104. To me, these were legitimate reasons for my fears, but alas, I obsessed over my health, and the internet became my connection to every disease on this planet. So, naturally that’s where I went when I wanted answers, at least ones I could take to my doctor. I wanted him to know I was intelligent when it came to my health, you know a real sleuth. I was taking control.

I turned on my computer, went to my trusty search engine (Google) and typed in dizziness and off-Balance feeling. I got #6, 524, 345, 678 results! Ok, I would be there a while, I figured. After seven hours of searching over everything from constipation to cancer, I couldn't see straight and a panic attack was knocking on my door. I had to downsize. So, I just typed balance problems. Better, now it was only a couple thousand pages—that I could handle. Armed with my new-found information, I headed to the doctor. He did a complete exam, looked in my ears and said, “You have a red ear.” Red ear? Was it bleeding? A sore, what? An infection. Ok, have had ear infections for years, no biggie. Take an antibiotic? That’s it? I had my stapled concoction of possible diagnoses and he tells me an ear infection? Well, my ears did feel full and stuffy, and to think about it, I would slap anyone who touched my sinuses, so yeah, made sense. I’ve always had sensitive ears, a stink load of infections as a child. In fact, I had an infection so bad; my hearing was almost gone in my right ear. My mother never took us to doctors. Whatever we had would be cured by herbs. Too bad my rotten teeth couldn't be cured by that.

Monday...And Part Two of Adventures in Dizzyland

Before I post the second part, I just want to say thanks to those who have seen this blog. The skies are starting to clear, and it may be just for one day, but I'll take whatever sun I can get. The air is clear and beautiful, and for a Monday, I will definitely take that! :)

Adventures in Dizzyland Continued...

That was five years ago. How things change. At the beginning of this journey, I started feeling little things, such as leaning over to the left side when I drove, mini dizzy spells from looking left to right, feeling like someone was continually pushing me forward. I am short, well height-challenged if you want to get politically correct, so I always had the seat forward, grasping the steering wheel so as not to feel like my arms were reaching for the sky. Now, I pull the seat forward as far as it literally can go, as well as the headrest, which my husband, being 6’3 would smother to death if he couldn’t change positions when he drove. I clutch the wheel, hoping a dizzy spell doesn’t attack me going 45, or anxiety doesn’t creep up on me and I have to pull over and tell myself, “You’ll get through this, just drive like your grandmother did at eight-five-years-old and you’ll make it home.” Believe me, having a dizzy spell in a car is frightening, but when you’re driving three plus kids around with you, it’s downright terrifying. 

 I tried to never let them see me panic, but also teaching two teenagers how to drive being dizzy, well I should have been institutionalized! The first time my daughter drove on the freeway with ongoing construction that would last at least a hundred years, I said a quick prayer, not that she wouldn’t cause a crash, or someone else, but that I wouldn’t freak us both out, try to slam on non-existent brakes, slap her against the seat, to “protect” her, or scream there was a rock in the road that would blow out a tire and we would go careening down a snowy embankment to our inevitable deaths. Over paranoid? Of course, but being in a car with a balance disorder was a thrill a minute, and not the kind you get when coursing down a 100-foot drop on a rollercoaster and screaming your lungs out, as your hair flies off your head and whiplash is an underrated medical term for your neck snapping in two. No, this was sheer terror, thinking the lines of cars would rush backwards and smash into you. Sound a little off? Well, with a balance disorder, you don’t quite know where you are in relation to space, so when things go rushing by, instead of watching them and knowing you’re moving, not them, I feel like everything is alive! 

 There is no stability that grounds things when in motion. In essence, the cars, trees, buildings, everything is moving, and I’m the one standing still. Now tell me, would you feel safe and comfortable in a car, with your sixteen-year-old daughter driving? Thought so. And yet, I had to take her, made sure she got her 40 hours of driving, which I doubt EVERY teenager did honestly, right? Then, because I was a glutton for punishment, I did the very same thing with my teenage SON, who thinks a car is his master and what he says goes, and fast he goes!

Message to the World

This is my first blog post, writing my own, instead of ghostwriting for other company's blogs. I figured it was time to start my own; and although I have had other blogs in the past, this time, I will keep it up and hopefully post not just about my haired life as a mother of three teenagers,  even though that could fill a book, but my opinions of life - in general.

I have often heard of the phrase, "Write what you know." Well, I'm no genius but I do know about writing - especially writing online. I do know when writing online, short sentences are better than boring, long paragraphs, so I will try and keep my posts short and sweet.

I thought about writing down my thoughts in poetry-style, just jotting down whatever comes to mind, which could be scary, depending on my mood. I am also writing another book, a non-fiction book called "Adventures in Dizzyland: My Up and Down Journey With a Balance Disorder." I would love some feedback on the pages I've already written so I will post these here, in hopes you will get a laugh or two, since most of it is written in a humorous tone. One day, I hope to get it published.

For now, I will leave you with a few paragraphs to get started. Please leave a comment if you enjoy this blog.

Thanks for visiting!

Julia

Chapter One

I Don’t Like this Ride

I wasn’t always in Dizzy-land. In fact, up until about five years ago, I was riding comfortably on even-land, walking upright and not feeling as if someone put a fifty-pound weight on my right side and pushed me forward on the plank to unknown-land. In other words, I had my balance, and oh did I so take it for granted like a recent blind person takes their sight for granted, or a paralyzed person took their legs for granted. For no longer could I swing by life, like a monkey through the trees, without ever falling out, mind you, and screech to the top of my lungs that I was free! And, it wasn’t just Boom! One day, I fell out of bed and lost my balance. No, it happened quite gradually, but I had dismissed it as an ear infection. If I got antibiotics and maybe some nasal spray, everything would be fine in a week or so. Well, it didn’t happen, so naturally, I went looking for alternatives, which led to a two-year mystery-finding mission. Let me tell you, I was more than a woman on a mission, I was a desperate mother of three children who could no longer drive, for fear I would swerve over into oncoming cars and kill us all, or drive like a maniac and have other people think I had one too many at the local bar; and believe me, a few of my friends and family members would drop dead if they ever heard of that happening!

I loved to drive, I really did. I loved to feel the car bend to my every push on the gas pedal; the ease of switching lane after lane, because of boneheads who thought going over 55 would raise their blood pressure to within cardiac arrest limits. I loved to feel the two-ton minivan cruise down I-15 in Utah, smooth as silk, crank the radio to the retro that was the awesome 80’s, singing like there was no tomorrow, and people turning to me, shaking their head and thinking “Wow, she has wayyy too much self-confidence!” I used to drive like I was the only one on the road, humming to my own tune, playing by the rules, mind you, but yelling at anyone who dared pull out in front of me, tailgate me or try to run me off the entrance onto the freeway—you semis know exactly what I’m talking about! It was great. I could go anywhere, anytime, for anything. That was the first freedom that was taken away from me...