My Biggest Surprise!

2016 was a crazy year for myself and Mike! The year will go down in (our) history. Not that we haven’t had challenges throughout our marriage, but dang! This year was a doozy! Almost everyone has something, don’t we? But in the midst of our chaos, the coolest thing happened… You, my dear readers! YOU happened! Somehow, you found me! Little ole Margaret! VEDA has been tremendously supportive of my blog and they post it regularly. I post it to Facebook, Linkin, and more. I still never thought anyone would actually read it! When I began this blog, it was really more as an ‘open’ diary. Just me writing about my life with a Chronic Vestibular Disorder and other things that happened along the way. Writing has always come very naturally to me and this seemed an appropriate outlet for me. I guess it was. My heart is bursting with gratitude this holiday season!

When I see that people from Countries I was unfamiliar with, people from literally all over the world, are actually reading my posts…It was my biggest surprise of 2016! I am elated when people comment and share with me. I feel this is HUGE because it proves we are not alone in dealing with these monsters called Vestibular Disorders. Between the Facebook Vestibular Groups I’m part of, and my work with VEDA as an Ambassador, it has become very clear, the number of us dealing with the disorders is crazy! What’s supposedly ‘rare’, turns out not to be as rare as the doctors thought.

When I discovered VEDA/Vestibular Disorders Association, I thought it such a fluke. I’d researched myself dizzy (hahaha) attempting to find more information about my Disorder. Don’t we all do that? Attempt to diagnosis yourself? Second (or third) guess your diagnosis?  Doctors are ‘lacking’ in their training of Vestibular Disorders. I knew of only two or three Disorders myself prior to diagnosis and it seems too many doctors have this same knowledge base.

How many of you have been told you have Labyrinthitis? Then, after not improving, another doctor says it’s Meniere’s or BPPV. Who do you believe? The medicines we are often prescribed can carry terrible side effects, sometimes worse than what we first ‘complained’ about. My first ENT was so very ‘old school’ and I’m not young myself, but even after 2 ‘positive’ Caloric Tests, Nystagmus almost constantly, throwing up round the clock, multiple falls, 7 broken bones, he would not give me a diagnosis. Why? Maybe I was faking all of it? I thought, back in 2003, I was the only one dealing with this type of ‘care’. How wrong I was!

There are around 1500 of you, from all over the world, who read my blog regularly and over 5000 who have read it! Say what? It’s shocking, validating, heartwarming, and empowering to me all at the same time! I thank you for making my year so rewarding and memorable, each and every one of you! I wish the very best for you in the upcoming year, be it finally getting a diagnosis, finding a cure, finding the support you need, or if you’ve just begun this journey, remember you are not alone. Happy Holidays to all, and to all, a good night!


If you have not yet signed our petition for Vestibular Patients for Smarter Doctors and Better Patient Care…/world-health-organization-who-vestibular-patients-for-smarter-doctors-and-better-patient-care please take a moment to read it, sign it, and we love your comments! Thank you! And as always, VEDA has the most comprehensive information out there!


We Are Due Change!

Oh, my! It has been a long time, a very long time since I felt this sense of accomplishment. I am one of many Vestibular patients that were misdiagnosed and in being told we have one diagnosis when it’s actually something else. So many of us are told the same thing, “It would seem you have Labyrinthitis. It will be over in one month…”. WE know better, we who have been forced to do our own research, and in doing so, we know there are at least 20+ Vestibular Disorders. Why don’t our doctors know this? There is such a lacking in how our doctors are educated. I’m talking worldwide people!

So, through my involvement with VEDA, I have met some amazing, inspiring, and knowledgeable people. I’ve met other awesome people through the Facebook Support Groups and my blog (all in virtual reality!), as we are from all over the world. This past week, I was asked to help write a petition to the World Health Organization (WHO). We worked for days, going back and forth, all over the world. I find this so wonderful, connecting with passionate, like-minded individuals who want, I mean demand, accurate diagnosis for Vestibular Disorders. I could easily go on and on about this, but I want to just share the link to the to read our petition. We did not write this just for us, we wrote it for YOU! You deserve an accurate diagnosis, we all do!

I hope each and every one of you, I mean you my wonderful, beautiful readers in the:

  • USA
  • United Kingdom
  • Canada
  • Australia
  • Ireland
  • Netherlands
  • Belgium
  • Greece
  • Italy
  • Brazil
  • Poland
  • Germany
  • India
  • Singapore
  • Argentina
  • France
  • Bangladesh
  • Croatia
  • Spain
  • Barbados
  • Malaysia
  • Romania
  • Oman
  • Mexico
  • Venezuela
  • South Africa
  • Philippines
  • Dominican Republic
  • New Zealand
  • Finland
  • Ecuador
  • Albania
  • Norway
  • Trinidad & Tobago
  • Peru
  • Denmark

Will you please read the petition and SIGN it today, then ask one friend, one family member, and so on to do the same. This could be HUGE!

Questions Galore. I Question It All!

I’ve started about 6 different posts and completed not a single one. Am I having brain fog or am I just scattered? I think it’s a little of both, but no matter, I still need to complete one of them! I continue to come back to this question, how did I wind up here? A 60-year-old woman, forced to retire from a career I loved because I am chronically dizzy? “If you can’t see it, then it’s not there“. We all know the feeling of having someone not believe you. WHY would anyone fake a Vestibular Disorder? Attention? I do NOT need this kind of attention, believe me!  I have come to realize, it takes a strong person to deal with an invisible and chronic disorder, a very strong person. I’ve come to believe I am this strong person. The old saying, “Walk a mile in my shoes”, comes to mind. To walk in my shoes, you’d have to be willing to take a fall at the drop of a hat and break some bones, multiple bones! Yes, a Vestibular Disorder is invisible as it lays within our brains, but the symptoms are surely visible. At the very least, they can see the bruises I bear from ‘clipping’  doorways or tables or the footboard of my bed. The fact is, I don’t get out much, not much at all. Nine times out of ten, it’s to go to a doctors appointment. So yes, I do a lot of wondering what got me here, besides the original sneeze…

If I look back at my medical history, I guess I have always been a ‘sickly‘ person. Aside from the usual childhood diseases of the era (circa 1958). My oldest sibling brought them all home from school. Most of these diseases either no longer exist or we now have vaccinations for, such as Measles, Mumps, Rubella, Scarlet Fever, Chicken Pox, Whooping Cough…My poor mother watching helplessly, as each disease traveled down the line of siblings. Catching one after another from sibling to sibling, all within a couple of months. My mother was the only one unaffected by that first school visit. Mother documented this period on a calendar and it was crammed full of notes, who got what when and such. It overlapped into the Christmas holidays, yet we still had our regular holiday, just 4 children opening gifts, covered with scabs! We all survived, with the worst side effect was scarring from the Chicken Pox. The Small Pox Vaccination was a ‘badge of honor’ for our generation, leaving a scar on our shoulder (Mike received two due to a distracted school nurse!). Small Pox no longer exists because of vaccinations. Was my mother a Saint? The simple answer, yes!

The only difference after that, my appendix was taken out when I was six-years-old ( this is me at that age above). I caught a Staph Infection at the hospital, prolonging my stay. This is the infection that, I believe, made me susceptible to every single thing that followed. It wasn’t a Superbug of today, but I’ve had a lifetime of some kind of illness, way more than the average person. Is this scientific? Of course not, but it’s my hypothesis…None of my siblings were hospitalized in childhood, just me. None had health issues like me. I was ‘teased’ for being sick. Isn’t that what siblings do, though? So I really wonder about Staph...Back then, simple Penicillin ‘cured’ it, yet it recurred over and over in me. We now know the overuse of antibiotics, makes us resistant to them. There was a time, I didn’t think twice about taking them, but I am now resistant to take antibiotics! Most of the diseases we get are viral anyway, making antibiotics useless. I think it makes us feel better that we are given prescriptions after seeing a doctor when we’re sick. Because when you feel so bad, you want that magic pill.

America is a prescription pill Nation. I’m beginning to question all the medicine I take after a mix up with my Lyrica (NOT my fault!). Most meds, I’ve been on so long, I don’t even look at the label to see if it was written or filled correctly. I just filled my pill holder until they’re gone, then call in for a refill. A few weeks ago, I ran out of the Lyrica (of course, it was a Friday…) and called in my refill only to be told, “It’s too soon”. Then, I did I look at the bottle. ‘Someone’ at the doctor’s office had called in half what it should have been! Of course, the person failed to properly document, thus remaining unidentified. really? According to the pharmacist, “She couldn’t call my doctor” (*note: Do not be ugly to the person who might save you) and according to my doctor, he was “On call all weekend, they should have called me. You can’t go without that medicine”…Regardless, I had to go without them for 3 days. Three days of almost immediate withdrawal symptoms, nausea, vomiting, profuse sweating, and pain unlike I’d felt in years! Lyrica is a Class 5 Narcotic they say is non-addicting but after that??? Now, I want off of it but am terrified after that experience. I know the dosage is slowly lowered, but still…Back to researching…As I have more questions now…

Nature’s Ability to Help Us Find Balance

We all desire a balanced life (even more so when you’re living with a Vestibular Disorder), one with all that life has to offer. We desire love but are met with misunderstanding. We desire good health but wonder if we can ever achieve this after what’s happened to us. When I’m feeling at my lowest, a stagger out my back door, my tiny piece of nature holds some of the answers. In the January 2016 National Geographic Magazine, one of the stories covered the importance of nature in our lives. The title…“This Is Your Brain On Nature”, brings to mind the old commercial of the egg in a frying pan, with the tag-line “This is your brain on drugs”. Whereas drugs will ‘fry’ your brain, nature will ‘heal’ our brains, if we actually get out in it, I’m talking to you, Margaret! According to the article, anytime we get out into nature, we are doing ourselves a favor, be it a backyard or the deep wilderness. Unplugging from all our virtual ‘toys’ is a necessity most of us don’t take advantage of enough. Is sitting outside while scrolling our phones the same thing? Well, if you’re looking at your phone, how can you truly experience all that nature has to offer? Yes, technically, you are outside. You can feel the warmth of the sun, feel the wind, hear the birds and so on. What are you seeing, though? If you looked up from your phone, you’d see the brightness of the sun, you’d see the birds, and the trees swaying. This was a fascinating read and it’s something I’ve believed for a long time, nature is good for us.

When I began this post, it was 104 degrees, sunny and barely a breeze. I was sitting outside watching my grandsons play in our hot tub (which in these conditions, it’s a cold tub) when I thought of this topic. The only reason I can be outside in these horrid conditions? Because we have a misting fan, a ‘beach’ umbrella and I was in the shade. My husband just called, saying a storm was coming. What? It’s too hot…Then, a huge crack of thunder (the boys jumped out so fast!), then the wind, and sure enough, a huge ‘heat storm’ rolled through.  I love the outdoors, but it hates me, with a vengeance! Since childhood, I’ve been plagued with Heat Exhaustion (faint, throw up and splitting headache!) sometimes within less than a few hours (or less!). I ruined many an excursion while on vacation, many. I have memories of my siblings complaining, my children complaining that ‘I ‘always’ ruin the vacation’! As Mike carried my limp body back to our car, mind you. I was a Girl Scout for 12-years and went to GS Summer Camp for 7 of those years. Each and every time, I was taken to the Infirmary (Ahhh! Air-conditioning!). Mostly, it was for Heat Exhaustion, but twice I wound up with illnesses our Family Doctor said he’d ‘only read about‘ in school (yeah, real reassuring!). My parents thought me to be their ‘delicate little flower’. I guess I do have a long history of illnesses…

I’m like a rose under a torch…I wilt fast! Unless I’m in water…It’s the perfect compliment to my Zodiac Sign, Sagittarius. I don’t truly believe Zodiac stuff, but I am a ‘Fire’ sign and my husband is a ‘Water’ sign…spooky, huh? I wound up in this arid region called West Texas when my dad was transferred here during an oil boom, I was 10 years-old…We did escape here after marriage for 6 months (seriously?) and for 10 years when Mike and I followed an oil boom to Central Texas. That’s God’s country! Rivers, lakes, rolling hills with spectacular bluffs to gaze off into the tree covered valleys. Our children grew up ‘Water Babies’, a method of ‘teaching’ them to swim as infants. When you blow on their face and immediately go under water with them, it’s a natural Reflex makes them hold their breath. I did this with both my children, but please do not try this unless you’re taught! Our son was about 10 months old when I started with him. At 8 months our daughter would sit on the side of the pool, lean forward and splash, she was in and going! By the time she was 4 years-old, all she wanted to do at the pool was swim laps! At first, the lifeguard blew their whistle at her, yelling “You can’t swim here, it’s only for __ age people. I came unglued! “If she swims the same as your magic age group, what difference does it make?”. Sarah was able to swim her laps, back and forth, back and forth…when she was finished, she was done, no playing, just laps. We inner-tubed down many rivers, swam in many lakes…it was Heaven! We were in water more often than not for those 10 years. Then,we moved back…

From West Texas, it’s a minimum 2-hour drive to get to the closet ‘lake’ and 4-hours to get to some real water sources like a river. Rivers are such amazing forces, flowing, twisting, turning. At times just a trickle during a drought, to a raging flood in a matter of hours after a soaking rain. Yes, Texas is a land of great extremes, of that there is no doubt. So just how do I get water into my Sagittarius Fire Sign self? Let’s see…I have a hot tub that in the hot weather, the heater is turned off. Voila! A box sized pool! In water, I can fantasize myself anywhere…Tahiti maybe? Bali? When I’m immersed in water, I’m at my happiest, that’s a fact! I have a water fountain I find soothing to watch and listen to (it also helps to drown out sirens and such). I love to sit by the fountain and simply be. Something as simple as studying the textures of the bark on our 40 foot Pecan tree, can bring such happiness to me. The rustling of the leaves as the almost constant wind blows through. I do a lot of thinking while I gaze at the Hummingbirds feed off the Turks Caps. For these moments are what bring me back to ‘center’ or ‘balanced’, something I think we all desire and definitely need. So, go outside! For nature heals…

It’s a Hot tub! It’s a Cold tub! It’s how I survive West Texas elements.

For more information on Vestibular Disorders, contact VEDA at

Shiny Objects…

It was such an innocent act of doing some kitchen cleaning, but it set off my first bout of Vertigo in a long time. I’m dizzy almost constantly but Vertigo…it’s a different beast. I was in the kitchen with my husband as he prepared dinner. I decided to clean our coffee area, a small area used almost 24/7 by me, a coffee pot for the morning (which is actually afternoon for us with his crazy work hours) and a Keurig for my evening coffee. I know what you’re thinking, that’s a lot of coffee! Maybe for a 9-5 worker, but crazy hours equals crazy amounts of caffeine. Back to my Vertigo…I was at the kitchen sink washing a shiny metal tray kept under the coffee pot. That’s all! As I rinsed the tray, turning it over and around, it caught the light from overhead and it ‘flashed’. All I know, Vertigo hit! I dropped the tray in the sink as I grabbed the edge of the sink and draped myself over it. Mike looked over at me, “What’s going on Margaret? Are you okay? What happened?”. “Calm down, baby! That pan made me dizzy, I feel horrible!” I realized how silly that sounded as this has never happened to me, a shiny object setting it off Vertigo. This tiny ‘spell’ though, set off another slew of feelings (other than the room spinning). Once you’ve experienced Vertigo, you know the difference between this and dizziness, this was Vertigo.

It may have lasted a few seconds, but the other feelings it set off ruined the rest of my/our evening. For me, it meant bypassing the BBQ brisket, beans, potato salad, and cole slaw dinner for… oatmeal! My body had immediately gone into ‘Fight or Flight’ mode; panic, anxiety, heart palpitations, sweating. The Vertigo, making me nauseous. Now my husband was worried about me. I felt frustrated this had happened, again...I went to bed full of fear and very nauseous but did sleep. I woke up today, feeling okay, yet still feeling defeated by this episode. My husband told me, “What you’re not seeing Margaret, is that you got through it! It happened and you didn’t fall. You didn’t hit your head or break any bones! You overcame it!”. WOW! Another shiny light hit me, this time in the form of a lightbulb in my mind…His words completely changed my outlook! He’d turned my negative experience into a positive one (see why I love this man so much?) and he was right! My first response was going to be, “NO, I haven’t overcome this!”, but for a change, I thought before responding. This really was a first for me, not falling during a Vertigo episode. It was the first time I didn’t let it defeat me. I hate when he’s right but love him to death!

If I’m 100% honest, since all this happened, I’ve taken a back seat to life around my house. I am so very blessed to have a man who picked up the slack on basically everything I used to do and he works full-time. Although I ‘d describe myself as a ‘hippie’, I’ve discovered something interesting the older I get, I have values of a 1950’s housewife! Yes, I feel if he’s working, then I should cook and clean. There was a time I did do all that and more, but that fell by the wayside when I became sick. My furniture is perpetually dusty (I am in windy West Texas), my bathrooms are clean (enough…), my carpet needs vacuuming (our Golden Retriever doesn’t help), the kitchen is clean (enough…), and my herbs and orchids need tending. Yes, there’s always something my mind is screaming at me, ‘Get up off your butt and clean this house!’. That’s the ’50’s mentality I’m talking about, I’m hardwired to be a ‘housewife’ (BTW, what does that even mean? Housewife…).

I’ve had to redefine myself so many times in these 60 years, it’s crazy! In the beginning, Mike and I were so free-spirited and carefree. We were/are inseparable. We met December 7th and married June 7th, he was 20 and I was 18 (YES, my parents threw a fit!), 42 years later, here we are. You may wonder about my/our ‘hippie’ side…in a quick summary, we hated the Viet Nam War (although my uncle served 3 Tours,volunteered for 3 tours. I was very proud of his service!), we didn’t believe in the Draft, I didn’t own a bra, our hair long and parted down the middle, hiphugger jeans with patches, halter tops, and Natural Childbirth (Lamaze to be specific)…I nursed our babies, made their baby food, baked bread I kneaded by hand every other day and made most of our clothes. No, you don’t have to be a hippie to do the very same (you might choose to wear a bra though). While I believed in the Women’s Rights Movement, I chose to be a ‘stay at home mom’, not so Women’s Lib. The fact of the matter was, I wanted to be just like my mother. A humble and beautiful woman, college educated, yet choosing to be a stay at home mother. She wanted 4 children, 2 boys, and 2 girls. That’s what she got, in that order, too! She was a wonderful artist. We lost her to Dementia a few years ago, I don’t know I’ll ever get over it, does anyone? If I summed up my mother in one word, it would be, strength. I want her strength.

2014-02-14 16.11.23
Mike and I contemplating life. Circa 1974
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Me circa 1973. Hippie chick me…

As I’m writing this, I see just how complex we are as people. We all have many ‘sides’ to us. So we can be more than our Vestibular Disorder? Lightbulb! I’ve lost so much with this damn thing, I get lost in my head and forget how much I still have…I have a man who has proved his commitment to our wedding vows over and over. I have two beautiful children and two precious grandsons. I still have my beloved dad, who is 88 years-old. I have a beautiful, totally neurotic Golden Retriever who won’t allow me sadness for long. I have a home that protects me from the elements. I have food. I have all this and more, but now I have an outlet, this blog, where I am ‘like’ someone else. In finding VEDA (, I found a community of people who get me and I get you. No two of us experience exactly the same symptoms with whatever Vestibular Disorder we have, thus our complexities. We are more like a shiny diamond…there are many facets to us also. Now, I want to further my Zen and listen, I mean blast, my all time favorite band…Pink Floyd’s ‘Shine on You Crazy Diamond’…in honor of all you Diamonds!

Into the Great Unknown…Part 3

The Traumatic Brain Injury (TBI) had swelled her head to the size of a soccer ball. Her abdomen was wrapped with some type plastic because she was still open! They’d performed as much surgery as they felt she could tolerate and would have to ‘go back in’ for further surgeries. There was a bar going the length of her left leg that was screwed into the bones, holding them together. Then, there was her right foot. It looked like a blown up doctor’s glove! I know this must sound exaggerated, but unfortunately, it was the honest truth. She had been put into a Medically Induced Coma to ‘help’ with the TBI. I have worked in the Medical field my whole life, yet had never seen (much less heard of) most of her injuries. I had so many questions, I basically ‘puked’ them out to the Nurses. We had just arrived, yet after 10 minutes were told we had to leave as ICU patients had very restricted visiting hours. I thought to myself, ‘Okay, everyone except ME, her mother, you have to go because I’ll be right here’…No, it was everyone with no exceptions…I panicked and looked for a place to kiss my angel, but where? She was injured head to toe, bruised and bloody everywhere! I chose to kiss the first place I’d kissed her after she was born, the top of her head. My lips felt small pieces of glass. I told the Nurse as I left, “Please take the glass out…” and was interrupted. “I’m sorry, but that’s the least of her problems”, she said as she gave me a paper listing all her injuries, her Doctors, her number, etc. I don’t feel she was rude or anything, it was a fact. Now, I felt so silly…

We met with one of the three Surgeons working on her that night. The ‘how’s and why’s’ were still a mystery, but what he knew… It was a head-on collision at a high speed (a highway). She had to be cut out her car. The engine had come through the car, landing in her abdomen. Her internal injuries from that were massive. She was Air-Lifted there. A Liver laceration (cut) caused her to ‘bleed out’ (you lose all your blood almost as fast as they transfuse new blood in). Her bowels would require another surgery (thus the ‘plastic wrap’). She was cut from under her chest to the pelvis. The impact hitting the left side, crushing her leg in multiple areas (thus, the bar holding it together, temporarily). Her TBI was a ‘Coup-Contrecoup’ (the brain is shaken side to side, or front to back) thus, the drug induced coma.Her pelvis was in multiple pieces, but this could ‘wait’. Then there was her right foot (that resembled a blown up glove, NOT a foot!)…It was front to back crushed injury, with almost every bone broken in it. These are seen in accidents where the person is attempting to stop a car (her foot was trapped under the brake). About this time, another Surgeon entered, a big ‘teddy bear’ of a man. He was the Surgeon that said, “No, I won’t amputate this foot. It’s viable, I can save it”. I felt myself take a gasp! It felt as if I hadn’t taken a breath since we entered that room. I somehow felt a glimmer of hope over his statement.

I was exhausted, but it would be hours before we’d find sleep. We stayed and waited for the next ‘visiting’ time, over 3 hours away. Her husband was despondent, repeating, “She just dropped me off at work”. My body was running on nervous energy, not requiring or desiring food. We stayed for 2 more visits, which felt more like a ‘viewing’…Our beautiful angel lay motionless, tubes and wires everywhere, a machine breathing for her. Was she really still ‘in’ there? As we left, I realized the glass bridge was ahead! A moment of panic was replaced with, “I have to do this! If she can survive all she’s been through, oh my gosh! I got this, and I did! Back into blackness, yet somehow ‘seeing the light at the end of this tunnel’, we began this journey together. We would need each other to make it through, and we did know, we are stronger together than apart! How long ago had I gone on my ‘Walk’? Although it felt like months, it had been one week; 7 days; 168 hours; 25,200 seconds since I’d felt a ‘weight’ lifted…Had the ‘weight’ been lifted for me to handle this?

Into the Great Unknown…Part 2

We traveled as fast as we could safely, but I’m sure Mike wanted to speed. Hell, I wanted to go at Cyber speed or just somehow be Tele transported to Dallas! We stopped only for coffee and bathrooms. Big coffees! I thought the trip to Ruidoso was blah. This stretch of highway was ‘back roads’, going on and on into the blackness. My surroundings were matching my mood, terror, sheer terror. I was terrified for our daughter. I was terrified of the darkness. The only light, the eery glow from the car’s dashboard. Mike and I spoke very little, we just held hands. We were still numb from the news, still attempting to process those words…”Sarah was in a head on collision…”. The black sky I stared at offered no answers. I was dying inside wanting to call, but we were still out of range. Now I was staring at my phone, praying that damn ‘No Service’ icon would disappear. THREE hours in, the icon disappeared, then it hit me, ‘Do I really want to hear the possibility our daughter had passed’? Well, if that was what I heard, NO! My hands were trembling as I called her husband.

My call went to a message saying, ‘This mailbox is full and can accept messages’, I felt my stomach turn over, this wasn’t a good sign. I tried his parents, his mother answering immediately. “Margaret, how much longer until you’re here. She’s in bad shape. The doctors have performed emergency surgery…”, Iva said slowly. “What did they have to do? Why did they start before we’re there”? I asked through tears. I told you I wasn’t processing this, thus the stupid questions. They’d been working on her for hours already, just how long can she be under anesthesia? Iva began listing her injuries and they were truly massive. She had a severe Traumatic Brain Injury, Internal injuries, many badly broken bones in her left leg and right foot had been crushed…My mind honestly, immediately turned ‘Mom Mode’ on, after a year or so in hibernation. Both our children were married and Mike and I were off in a ‘new direction’, getting back to us, getting ME well!  Our calls went back and forth for hours. Twice, Iva told me, “They’re not sure she’ll make it”. Each time I asked Iva to ‘please tell her we love her and we’re coming’…I look back out my window and want to scream out loud, but don’t…ANSWER ME BLACKNESS! Oh God, save our baby. Don’t YOU know what’s happened?

It was 8 am when we pulled into Parkland Hospital.We had been without sleep at this point for over 24 hours! All the coffee we drank made us shake, or was it pure fear of what lay inside? Likely a combination, but now my gut just ached! Dizziness hadn’t even crossed my mind the whole way, but as we began the trek into the largest Hospital I’ve ever been in, I think it was well over 10 stories. I looked up, up, up, my eyes began ‘that’ feeling. I grabbed Mike and told him, I had to sit down. I didn’t think to say, “I’m dizzy”! (he’s supposed to know these things!). I didn’t wait for his answer. I did what I felt I had to. No place to stop and sit? No problem, just stop and squat down! As soon at the dizziness passed, we were off again, this time having to cross a glassed covered bridge. Seriously? What was I suppose to do? How will I do this, crawl?  The bridge was about 3-4 stories up, I am also scared of heights, it felt an impossible task. Mike was going to have to drag me across! He took my arm firmly in his and told me to close my eyes, he’d guide/drag me across. I had no choice we had to get to Sarah. This damn glass bridge wasn’t going to stop me! Although it was a sunny morning, I found myself back into blackness, eyes closed tight, but I did it! Little did I know, I would cross this bridge over 100 times in my near future…

As we entered the Hospital ER, chaos engulfed us. The lights, the sounds, the smells, people in various states of injuries…We asked where she was at the first Nurse’s Station we saw and told where to go. I’m absolutely overwhelmed, exhausted, and terrified of what awaited us as we walked further and further into the cavernous space. I felt ‘swallowed’ by it. Finally, at the end of a hallway, I saw Iva. The look on her face told me everything, it was bad. She hugged me tightly and said, “You can do this Margaret”. Do what, what was it I could do? Iva took me by the hand and walked me into Sarah’s room in ICU. My first thought, my honest first thought, ‘That’s not Sarah’…It couldn’t be! Sarah is beautiful, full of life…This poor soul was unrecognizable! I looked to Mike for confirmation. The tears pouring down his face gave me the answer my mind still wasn’t comprehending, that this poor, unrecognizable soul was indeed our Sarah…


You Just Have to Push Through…

My new routine began with that dang black and white fabric, and the red ‘X’. As I think back, it seems so ridiculous I’m laughing to myself right now, but it brought on panic attacks during this time period. I really needed my husband to cheer me on just to DO the exercises (did I say cheer or force?) and he was by my side. He supported me as both a cheerleader and physically (in case I fell off the chair!). I took anti-nausea medicine about 1 hour prior to a session as recommended. Then, (with wastebasket close-by just in case), I sat in a chair and began.

Initially, just looking at the pattern for a few minutes was all I could tolerate before Vertigo and Nystagmus set in. I gripped the chair seat and started swaying as I did them. Oh, and gagging, not sick, but gagging. The medicine apparently worked well in stopping actual throwing up, but it didn’t stop the gag reflex. Of course, I wanted to stop as soon as I started! My cheerleader reminded me what my PT advised. Actually, he threatened to call her and tattle on me…I’m sure in truth, I’d never had done them at all if Mike hadn’t ‘encouraged’ me so faithfully. A session lasted about 10 minutes at first and it left me exhausted! After about two weeks, I wasn’t making the progress I thought I should have. Was I expecting too much? I called my PT and put my case before her, “I’ve been trying to do these exercises and all it’s doing is making me gag…I get so tired after doing them…it’s harder than I thought…I don’t think I can do them…”. Okay, I whined it to her.

She listened patiently, then in her soft voice explained that ‘yes, I would be very tired after a session. Yes, they would be very challenging and I might feel ill’. Worst of all, I’d ‘most likely feel worse before I got better’! Oh, really? Why on earth would I want to feel worse than I already have? I listened, not so patiently. Then sounding really dumb, I blurted out “Uh, I don’t remember you telling me this, are you sure?”. “Yes Margaret, if you’ll refer to the folder I gave you, it’s all in there…”. I immediately set my eyes on Mike, and mouthed the words, “Did I get a folder?”. Mike calmly walked over to a stack of papers on my side of the bed and pulled out said folder waving it in the air. Where was I when I received this? My brain was not laying down memories because of all the stress.

I quickly apologized for bothering her and was told to ‘Call anytime, and reminded me she was a teaching professor, just leave a message. She’d return my call as soon as possible’. She assured me I wasn’t ‘losing’ my mind at all, that my brain was constantly working to accommodate during Vertigo and Nystagmus attacks. To put it simply, my brain ‘prioritized’ information. It was more important I stay erect, compared to receiving a silly folder! It was so reassuring to hear, after feeling the stares of people who didn’t know or understand my battle. Those who have fought or are currently fighting can understand this, I think.

My new routine became, well, routine. Would it be a good day or a bad day? How’s that for a routine? It boiled down to, how would my body/mind handle the day? The VRT exercises took a lot out of me, I knew I needed to take care of myself, but having a ‘caregiver’ personality wasn’t helpful at all either. I was having such difficulty ‘accepting’ this new role as a patient. Each day began with the best of intentions, but sometimes it was just too much. When I had a good day, my mind drifted to work, I missed it terribly! I’d think about calling my Supervisor with the great news of, ‘I’m coming back’! I knew my absence put them in a hard position as it was my co-workers that were picking up the slack. Then, a bad day would show up seemingly out of the blue, but in reality, I’d overdone the exercises. I felt I was on a new treadmill and wondered if I would or could ever get off.

For the first 3 months, I felt no different and maybe even worse. So when my next visit to Dallas rolled around, I have to admit I was not very nice with my physician or therapist. I came at them with all my frustration! I’m so glad they remained professional because I certainly was not acting like the professional I was. I had become the patient. I was reassured by both ‘everything was looking good’. Oh really? I didn’t feel I was making progress but they did, I wondered who was right. I decided to believe them. I was just a very impatient patient.

My PT had me do the exercises while she observed. Of course, this time, I had no Vertigo or Nystagmus as I had at home, but she noted I ‘gripped the chair throughout and swayed in a circular pattern’. My new instructions, put my hands on my lap, do not hold the chair. “Okay, Margaret why don’t you give it a try”, she said in her soft, almost hypnotic voice. She obviously hypnotized me as I gave it a try. Hands on lap, check. Eyes on ‘X’, check. I began moving my head side to side, survived that. Then up and down up and down, up and DOWN! My startle response went into overdrive as I stopped just before actually falling. I felt like a fool! “That’s wonderful Margaret, see the progress you’ve made”! Uhhh, no I don’t, but if you say so…With a big smile, she says, “See? You just have to push through it!”. I guess I had, for now…

It Was All So Black and White…

I was now two months into adjusting to my new medicines and  was pleasantly surprised that I’d had so few side effects now! My debilitating nausea and vomiting were finally under control and I was finally out of bed and moving around more. This was all done within the safety of my four walls, where I was at least, able to maneuver about my home. I had ‘paths’ from one room to the next, with either walls or furniture to touch for bearings. If I did get dizzy, I’d have the wall to slide down or a chair to flop into for safety. I’d had enough broken bones! So, just as I’m beginning to feel ‘comfortable’ in my new/old life, time was approaching for my first appointment with the Physical Therapist.

On this trip to Dallas, I felt well enough to ride in the front seat but wore sunglasses to hopefully decrease the visual stimuli, it didn’t help. I felt hyper aware of movement now! I tried closing my eyes, but it felt like I was on a boat. I tried squinting my eyes, I tried laying my head on a pillow up against the window, and I tried wallering in a seated position but none of it worked. After about one hour, I’d had enough, now nystagmus began. Time for my back seat bed! Mike pulled over and tucked me in. I put on my sleep mask and hoped my eyes would settle down and it seemed to work! I hoped to drift off for a 5-hour ‘nap’. I meditated in an attempt to find my Zen place. I could feel every tiny movement of the car, every vibration, yet I drifted in and out of sleep. As I listened to my favorite band, Pink Floyd, I honed in on the lyrics to ‘Comfortably Numb’. I identified with the lyrics and longed to be comfortably numb myself…but dang, aren’t we there yet?

I woke up in the driveway of the hotel feeling very confused. I really had gone to sleep! Mike startled me when he got back in the car, but was in such a good mood! “So you decided to wake up? I’ve been trying to wake you up for the last 20 miles”! “I can’t believe I fell asleep”, I mumbled. He drove us around to our room (1st floor, thank God!) and we began unloading our car. I don’t know about others, but Mike and I always bring our own pillows (3 each), fans, and a sound machine with us when traveling, always! We look like we’re moving in for a 1-2 night stay, but that’s how we travel. There was good food close to the hotel, but I didn’t feel like eating ‘out’, so we ate to go food ‘in’ (was my poor husband ever going to get a good steak dinner?). We nestled into bed for the night well fed and feeling content.

Morning came way too early, but after some in room coffee, I felt ready to find out what awaited me. My Physical Therapist was in the same office as Dr. Roland, so this time, when we pulled into the circle drive, we knew where we were going. The same friendly faces greeted us, offering me a wheelchair (which I didn’t use, I had Mike!), offering an escort and a sweet “Good luck!” from a group of them. ‘Do they know something I don’t?’, I thought to myself. When we were alone in the elevator, I asked him, “What did they mean by saying good luck?”. He just looked at me. “I guess they mean good luck with your appointment, Margaret. What do you think they meant?”. Maybe I was being too sensitive. The elevator ride to the 9th floor was making feel horrible, my stomach was in a knot and my heart was pounding. “Oh! Mike, I feel horrible!” as I leaned on him. Of course, this is when we arrived and the doors opened.

I must have looked pretty pitiful, as the people getting on as we exited gave me an “Awww…you poor thing…” comment. Being embarrassed was no longer an issue for me. It was all I could do now to cling to Mike as we walked the long/longer/longest hallway to her office. The first thing I was aware of in the office was the carpet, it was a horrid, multi-colored, swirly carpet! I immediately felt dizzy and asked Mike to just sit me down and go check me in. He was back quickly I know, but it felt like forever. “You’re next in line Margaret!” Mike chirps happily. I tugged at his hand to sit down next to me so he could help keep me upright. I’d pulled out my barf bag (disguised as a gift bag) and had it at the ready, just in case.

I heard my name called by a woman’s very sweet voice, as I got up with Mike in tow and headed her way. Dr. Patti Blau PT introduced herself and had the nicest demeanor, I immediately felt comfortable.  As we turned to head towards her office she said, “Oh no, Mr. Byrne, I’m going to talk with your wife for a little bit, and I’ll call you in later…”. As these words actually exited my mouth, I couldn’t believe what I said next,”I’m sorry, but you don’t understand! I don’t go anywhere without him!”. Soft laughter came from her and off we went, she walked, I shuffled along, watching my feet, and dragging my fingers along the wall. We sat down in her office/examine room/treatment area. It was a large space with an exam table, wall charts, and many, many books. She asked me about my nystagmus, how long I’d been sick and meds I now took. Then she asked me to lay on my side, explaining she’s be ‘moving my head into various positions. Some may not bother me at all while others might  make me have a response’ (nystagmus). Oh boy! Now I was really excited, NOT! I wanted Mike to be here.

The first number of positions didn’t invoke a response, could I be well? Now I had to turn over to other side and do the same thing, the first was okay, but with the next position, HERE IT COMES! “This is it, my eyes are doing that crazy thing! What do you see? What do you think is going on?”. I couldn’t seem to stop myself. My eyes felt like an old fashioned Match 3 Slot machine, they were going around and around, then it felt like they just ‘clicked’ back into place. “Oh, I’m sorry but I’m going to be sick, I’m so sorry, I’m so…” I whined. My secret barf bag was nowhere to found, I’d left it with Mike! She slid the trash can to me. My first thought was, ‘I can’t throw up in front of you!’, but yes, it seemed I clearly could.

When I was finished humiliating myself, she offered my a box of tissues and asked, “So are you ready to hear what I found?”. Seriously? “YES! What did you find?” I blurted out. “No, wait! I need Mike in here!” I waited in her office while she retrieved him. He could tell I’d been sick, I wonder if the trash can between my legs gave it away? He sat next to me, took my hand giving me that ‘It’ll be okay’ look. Dr. Blau put it all so matter of factly, “Your Posterior Semicircular Canal is affected. You have Rotational Nystagmus as a result. You’ve become a ‘floor watcher’ and a ‘wall walker’. You’ve been dealing with this a long time Margaret, but I think I can help”. I had waited now over a year to get answers and I had so many questions, but my brain was trying to process there actually WAS help!

She spent over an hour with me, answering every question I put before her. This woman knew her stuff! We discussed my therapy would be a lot of Home Programs as I lived so far away and how difficult travel was for me. She picked up a stick wrapped in black and white checkered fabric. She hung  it on the wall and I felt Mike’s hand on my back, “Where you going, Margaret?”. I was unaware that my body started leaning over as the fabric rolled down. “Oh my gosh! That print is making me sick!” I whined. Dr. Blau continued, “This will be your therapy tool. I will place a red ‘X’ in the middle. I want you to stare at the ‘X’ and move your head slowly back and forth, then up and down, keeping your gaze on the ‘X’. Ready to give this a try?”. Uh, well, NO! was what I wanted to say, but I gave it a go. Okay, I’m staring at the ‘X’ and here I go…I’m going…okay now, here I go…No, no, no! And I’m sick…”Well, that’s enough for today. I want you to do these 2-3 times daily. You should take your nausea medicine before you start. I will see you back here in one month”, she said in a chipper voice I didn’t appreciate. Had we driven to Dallas for a piece of black and white checkered fabric? I could have done this much (then why didn’t I?), but I was going to give my black and white therapy a ‘college try’. What would I have to lose?

The Long Road Home

As we drove back to our daughter’s, I was now in wallering mode (my’medical’ term for rolling side to side while loudly moaning) and so sick at my stomach, I was running out of replacement bags for my Christmas sack! We still had to stop by the drugstore to drop off my new prescriptions, but I whined and wallered around enough, Mike was more than willing to drop me off and do it himself. I just fell onto the bed as soon as I got inside, I was absolutely exhausted! I lay there going over my day in disbelief. This was such a horrid way to spend a birthday (birthdays still meant something to me, I was young). My sweet daughter tried her best to make it special, surprising me with a cupcake and lit candle, singing ‘Happy Birthday’. When I heard the singing, oh the dread! Not so much the song, as what would come with it, and I did NOT want to see food! But she’s trying so hard so I mustered up a weak smile, then ran to the bathroom to throw up! Lovely, just lovely! I tried, but I dove for the bed as soon as I was through. Where was Mike, and why was he taking so long? Sarah reminded me, it had only been 30 minutes…are you serious? I wanted my new meds NOW! It was another 30 minutes before Mike came back and I grabbed the bag as if I were a drug addict getting their ‘fix’, but that’s how I felt at the end of a now 12 hour day. The new medicines were Gabapentin 300 mg 2x daily (for the Labyrinthitis) and Zofran 8 mg 2x daily (for nausea/vomiting). The Zofran would replace the Scopolamine Patches that had given me sores behind my ears.

The patches most common use is for sea or car sickness and meant for short-term use, not over one year! There were no generic Zofran, it was too new, yet even with insurance it was over three hundred dollars! It was mainly used for Chemo related nausea, I’d been dreaming for the ‘magic’ pills that would make all this just go away and the Zofran worked-finally!, I would have to get used to not being sick at my stomach, that would be something new in my life. After sleeping in until noon, I woke up for the first time in such a long time, it almost felt odd, ridiculous I know! Mike knew how much the testing took out of me, but he had to get back to work. Since the nausea was so much better, I had no issue with him making a bed for me in the back seat. I was chauffeured home by the most wonderful man in the world leaving me plenty of time to mull over my future. I was happy but scared to death, all at the same time.

By the end of our 6-hour trip, I was sitting in the front seat, I know cool huh? Well, I thought so, especially with it being dark. I hate driving in the dark, but I wasn’t driving! I have night blindness and plenty of fear to go with it, so truthfully I don’t drive in the dark. We were finally home and just dragged ourselves in, leaving our luggage in the car. We both needed sleep so badly, but my mind had so much to process. I lay there next to my sleeping husband, his rhymic breathing soothing my soul. I finally had answers, but how was this going to affect my life? It had already taken so much from me. Just to be rid of the nausea was amazing to me! Mike’s breathing in and out, in and out, in and out…I fell asleep feeling happy, something I hadn’t felt for the longest time! Tomorrow, it can all wait until tomorrow.

The first number of weeks following my wonderful birthday diagnosis were spent adjusting to the new medicine (side effects) and just moving around as much as possible (which wasn’t much I assure you). Without nausea and vomiting ruling me, I DID want to test myself but vertigo stepped up in its place. I fell a few more times, broke my tailbone before listening to Mike. Silly man! He thought I’d listen? I’m stubborn beyond belief but after the last tailbone break, I was both hurt and humbled! All broken bones hurt, but the tailbone has so many nerves going through it! I was feeling so frustrated, just laying around now. Thank God, I’d taken the Medical Leave of Absence, but I was missing my work. Most people aren’t blessed to have a job that they love, work that never felt like work, it was truly fun for me! I had to get well, so I could return, but as you’ll see, my life was going to be tested in a way I would never have imagined.

My body was adjusting to the medicines well after about one month, with nausea becoming a ‘faint memory’. I was ready for the next phase, VRT (VestibularRehabilitation Therapy) and that was still a few weeks away. I immersed myself in everything I could on the subject and came to the realization, I DID Vestibular Activities with children at work as part of Sensory Integration! I was curious if I’d be doing what I had asked of those children in therapy. Why don’t I just treat myself? This was so odd! Who was I anymore? Margaret the Therapist or Margaret the patient? I was so confused by the time my appointment came around, I did conclude that (for now), I was Margaret the patient. My life would change drastically after meeting my therapist…