The Waiting Game

I think all of us have played ‘the waiting game’ in one way or another and I realize… I suck at it! I’m playing it right now, waiting on the results of my recent Stress Test. I certainly didn’t plan to do the Stress Test, we should but rarely do, none the less, I had one earlier this month. Ironically, I find it very stressful waiting on results.

This all began the day after our off-grid vacation, oh so typical for my life. I had a routine appointment with my Mental Healthcare doctor. The nurse took my vital signs and I was so busy talking about our vacation, I didn’t ask what they were. Besides, they always seem to be the same anyway. When I was called back, the first thing my doctor did was take my vitals again, which has never occurred. I sarcastically asked, “What’s the matter? Am I dead?”. He just looked at me like a deer in the headlights and took it again… and again… and AGAIN! He sat down and asked if I felt faint or light-headed. “No…why? What is going on?” I asked, panic quickly setting in. He said my pulse was ‘dangerously low’ at only 40 beats per minute. This was really odd because I have a benign type of tachycardia (P.A.T.) which is a very fast heart rate that hits out of nowhere.

My visits with him are, in general, around 15 minutes because he is the doctor who ‘medically’ manages my issues of PTSD, Depression, Anxiety, and Insomnia with drugs. I would have to go elsewhere to talk with a psychologist. If this sounds stupid, it is but this is what our insurance pays for… Anyway, within a matter of minutes he tells me, ‘As a Geriatric patient, your body has built up the Xanax (anti-anxiety med) and I want you off of it by next week…’ First off, my brain shut down when he called me a Geriatric patient. I will fall into this category soon enough but I’m certainly not there yet! He asked if I thought I could do this and I said yes, I thought so. I did say, “You remember I’ve been on this forever, right”? My Geriatric brain was still stuck on my ‘classification’ and I forgot to ask any questions. Better yet, he told me he was going to be ‘gone’ most of the month. I shuffled out of his office. Now it was me looking like a deer in the headlights.

The first thing we did was purchase a blood pressure cuff and I made a call to my regular doctor. Sadly, I just went off and he got the brunt of my frustration. “My heart isn’t beating right! The other doctor said…”. This is what I love about him, he’s calm, soft-spoken, knowledgable, and he listens. Even when I sound like a fool! He’s in excellent health and has a resting pulse in the 40’s. I reminded him how unhealthy I am… He gave me a schedule to titrate me off Xanax. Dang, I was totally stressed out now!

The next day, I made an appointment with Mike’s Cardiologist. I still felt like nothing was truly wrong but that new blood pressure cuff verified something was wrong with my heart. My readings either gave a low heart rate (still under 50) or it said ‘Irregular Beat’, not reassuring at all. Oh, yes, Mike was taking his blood pressure with me but his reading were clear, definitive. I actually got into the doctor within a few days. My first visit was what I expected, a detailed history and an ECG (Electrocardiogram). He informed me there was an ‘irregularity’ and he wanted to do a Stress Test and have me wear a Holter Monitor (a portable loop recorder ECG worn for 24+ hours). I’d have to wait (again…) two weeks for the testing. This is the type of waiting that brings anxiety to me. Sigh…

Doing a Stress Test, has been something Mike has pushed me to do since he was forced to have stints placed a number of years ago. I really doubted my ability to physically do a Stress Test. I was ready to give it my all on test day. It was just the doctor and I in the room. I reiterated my Vestibular issues and he was unusually understanding. He also made a point to show me where I had an Emergency Stop button and we began. The treadmill faced a window which I thought would be a plus, it wasn’t as it made me see a ‘false’ horizon. I’d just acclimated to this illusion as he sped it up. I was concentrating so hard on this, I forgot a quick head turn can be a trigger. He asked me questions throughout and I answered him staring straight ahead. So, when he asked me something (I don’t even remember what), I turned my head and WHAM! A full-blown Vertigo attack hit me, I tried holding on tighter when it suddenly stopped. The doctor knew immediately what was wrong so he hit the button. “Dang it! Oh, I’m so embarrassed, please let me try this again…please, I know I can do it when I get over this”! I was pleading to do something I had resisted for years. “No, I have enough information…”, he said as he left the room. I felt like a failure. Before I left, the nurse put the Holter Monitor on me, I just wanted answers AND assurance, I am okay.

It was almost another two weeks before I got my answer, a very stressful and anxious two weeks. He began with, “There is definitely something wrong but it’s not life threatening”… Uhhh, good news? He told me I have PVC’s (plastic pipe, what?) Premature Ventricular Contractions. We all have a ‘battery’ in our hearts called the Sinus Node. It puts out an electrical signal but in my heart, the signal gets ‘confused’ in the Ventricle Chambers. I know, I don’t fully understand it yet but the oddest part of this is, my heart is beating ‘normally’ but if you take my pulse, it will never be accurate. You have to listen to my heart itself for accuracy. Oddly enough, they don’t know the cause, it’s most common in ‘white women in their 60’s’, oh good Lord! I’m on a very low dose of a medication to help with electrical function, time will tell… I go back in another month and will write an update then. Until then, I will be meditating more…

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Success, Large or Small, Is Still Success

I don’t consider myself a ‘whiner’, although it may come across as just that when I talk about living with a Chronic Invisible Vestibular Disorder. Now, that’s a mouthful in and of itself! I’ve talked about the many things I am no longer able to do (with ANY sense of confidence, anyway), that I forget the things I was/am able to do. Just because I deal with dizziness and imbalance daily, doesn’t make me ‘useless’. Just because I can no longer work for pay, doesn’t make me useless. I think I’ve proved to myself, by starting this blog, that I can write. Mother would be so proud! I think I’ve proved I can step outside my comfort zone by becoming an Ambassador for VEDA. I’m part of an Online VEDA Support Group Network. Now, I’m helping an aging parent. Can a chronically ill person really take care of someone else? Time will tell…

Whether or not it comes to fruition, a recent request to use ‘my’ story for the Vestibular Disorders Associations/VEDA newsletter, made me remember something. During my years of undiagnosed Vertigo and vomiting and taking tumbles that resulted in broken bones, I did accomplish something, a really big thing! Somehow, during one of the worst times in my life, I designed and made our daughter’s wedding dress. Ten yards of fabric, 748 gold beads, 372 pearl beads, 3 fabric roses, fully boned corset style bodice with a hand picked zipper=one totally extravagant wedding gown! Less than one yard was used to make the bodice (top) and NINE yards was used in the skirt! How on earth did I do that?! Did I ‘will’ myself to do it? Was it a miracle from God? I’d say, a little of both…

In my now 61 years of living, I’ve had more than one career, not that surprising. My first (and most important) career was a stay at home mom. Prior to becoming an OT Assistant, though, I actually designed wedding and evening gowns for over 10 years. I’ve sewn since the age of 7, an apron with matching potholder was my first project. I was taught sewing by my mother and her mother, the seamstresses in our family. My grandmother taught me all the finest couture techniques (hand work) during my Summers as a teenager. As a young mother, I became part of a Designers Guild, putting on multiple fashion shows a year. I thought it was glamorous and it was a blast! It was a lot of work, but I loved it. Our children sometimes watched me constructing the gowns from the other side of a ‘kiddie gate’.  We all know these barriers are only useful until they learn to climb over it! More than once, Lewis ‘helped me’ by removing pins that held fabric EXACTLY where I wanted it on the dress form, then re-pinning the fabric into his design…Working out of your home doesn’t always work… I did this long enough, though, for Sarah to expect me to design hers one day. I think my feelings would have been very hurt if she’d wanted to buy one, Heaven forbid!

When that day came for her many years later, I had to do it. I just HAD to! But, it would take me 3x longer than in the past, because I was so sick and still undiagnosed. My ‘usual’ timetable for an original gown would be around 3 months or more depending on the complexities of the design. Here’s some of my process from when I had my business. I met with the client, listened, looked at their magazines or pictures. Then, I’d sketch out a few designs, meet again, and they’d pick one. From there, I took a ‘million’ measurements (kidding…kind of!) and made a pattern from a special paper (NOT the tissue paper you get in a store pattern!). Once the paper pattern was made, the entire gown is cut and constructed from muslin fabric. The muslin gown is fitted and altered (it better not need altering!). Then, it’s disassembled to become the pattern. All this is done prior to cutting the gown fabric. I learned this the hard way! I HATE to alter gowns, absolutely hate to! My work is meticulous. My gowns fit! I loved to show the client how the inside of my gowns was just as beautiful as outside (couture work)!

Oh, I did complete Sarah’s dream wedding gown, but I was working on parts of it until the last second. As in, literally the last second! I did most of the beadwork over the months while sitting in bed, a tray full of golden beads with needle and thread ready to sew. Mike grew fairly tolerant of waking up with gold beads stuck to us in the morning. Actually, any and all handwork was done on my bed or the couch, which was the bodice/top of the gown. Sarah had lost so much weight during the making, that it was likely half of that by the end, the dress is a size 0! You know, that made up dress size that didn’t exist when I was young…  Then, I had to gather the remaining 9 yards of fabric for the skirt and attach it onto that tiny little top! Ugh! It weighed a ton! It was hot! I was so sick and oh, was I tired!

Finally, all that was left to complete was the hem. Again, under normal circumstances, I would have done this by hand. Beautiful. Delicate. Invisible. Yes, all 9 yards would have been hand hemmed, but not this time. I used my serger and did a machine hem. Oh, the shame! Oh, the horror!  That’s all I had left in me, a machine hemmed gown for our daughter…A serger is a machine that both cuts and sews a seam or hem like they do in factories. Go ahead, check the seams of your garments…It’s a very cool machine and I love it, but not for Sarah’s dress. But this time, I did. Zzzzzzzzzzzz….I was almost to the end of the hem, only about one yard left. It started dragging and I started pulling. “This isn’t happening!”, I screamed in a pitch that hurt even my ears.  The cutting blade had become dull, no longer cutting the fabric properly. I pulled that damn fabric through it, though. Yes, yes, I shredded some of that last yard, but it was done!

The finishing touch was to hand sew a label my mother made for us (with her computerized embroidery machine), which read, “Made With Love by Mom”…And that it was! So, I did accomplish some things during one of the worst periods in my life…Huh! Think about it… I’ll bet you too, have made accomplishments during these very trying times that you may have forgotten or not given yourself credit for. You got out of bed today? You showered? You played with your children? You were actually able to work this week? Big or small, they are still your accomplishments, celebrate them!

For more information please contact vestibular.org

I’m Team OT this Time Around…

I’m not sure if it’s because VEDA has their upcoming Balance Awareness Week (September12-18), or if I am making an experiment of myself, but I’m going to whole-heartedly do VRT, again! Yes, again, after these many years! This time, though, I’m applying what I knew best, Occupational Therapy Based VRT. I’ve pulled out resources and this is my plan (do not do this yourself!), I look at my ADL’S or Activities of Daily Living, which simply put means, what do I do in my daily living (showering, housework, cooking, etc.). A great example would be the loading/unloading of my dishwasher. I have to visual scan what is in there and Motor Plan where and how to complete this task. I know I’ll get dizzy if my head inverts (upside-down), so I incorporate a squat to keep my head in a more neutral position. Raise up, turn body in the direction needed (still having trouble with quick head turns). I have to tilt and turn my head in putting away my dishes. It’s all done very ‘mindfully’, I really need to concentrate on the activity. I’m lucky, my kitchen is a Galley style (two sides facing each other), so there’s not much area to take a fall. I always think about my fall risks, as I’ve broken seven bones. Below, I’ve listed the areas an Occupational Therapist evaluates. As you can see, it does involve every area of one’s life, even Sexuality and Spirituality! At my worst, sexuality was the last thing on my mind, but on a good day…I continue with amazement with all Occupational Therapy entails. I’m giving you some insight, there are options with VRT.

*This is NOT for you to ‘treat’ yourself, it’s simply for a look at another side of VRT.

 

Appendix 3. Examples of Impact on Activities of Daily Living

*Eating: leaning across a table to pass something

*Bathing: bending to reach the legs, feet, perineal area, closing eyes to wash hair

*Toileting: bending to wipe, bending to pull garments up or down, maintaining balance      while standing to urinate (males), twisting to reach toilet paper if behind toilet

*Transferring: sit-to-stand transfers from toilet, other seats

*Grooming and hygiene: bending the head forward to groom hair or brush teeth

*Taking medication: bending the head back to swallow medication

*Sexual activity: being in the superior position and weight shifting or moving the head rapidly; stability on water bed or other positioning furniture

*Sleep: head movements during sleep, changing sleeping positions, or maintaining the head in certain positions during sleep will elicit vertigo and cause waking, possibly nausea, and disequilibrium while groggy

*Instrumental Activities of Daily Living
Meal preparation, cleaning, other home management skills: Bending down, looking into  high or low cabinets or shelves, and tasks that require repetitive head movements may all  elicit symptoms. Task performance may be compromised or the task may be abandoned  altogether.

*Gardening, yard work: Tasks may be performed less efficiently or abandoned; falls may  occur on uneven ground.

*Vehicle care: Car washing and changing oil and filters may be difficult or impossible.

*Child, elder, and pet care: tasks that involve picking up and carrying loads, bending  rapidly, performing or assisting in transfers, diaper changing, cleaning up messes on floor

*Community mobility: Driving will be more difficult, especially under conditions of reduced visibility, and may be abandoned or performed only for limited errands.

*Shopping: Navigating stores, carrying packages, bending to pick up items, scanning shelves for items will be more difficult and may be abandoned.

*Safety: ascending/descending fire escapes and stairs, dim areas with only emergency lighting

*Play, leisure, social participation, religious activities: Visual motion sensitivity, difficulty kneeling, navigating in crowds, vertigo elicited by repetitive head movements or bending the head down; activities and rituals may be severely restricted or abandoned.

*Work, either paid employment or volunteer jobs: Symptoms elicited by a wide range of tasks will cause reduced efficiency and sometimes total inability to per- form some jobs, depending on task demands.

Appendix 4. Examples of Performance Skills Affected by Vestibular Impairments

*Posture: Standing balance is impaired in most people with vestibular impairments. People may tilt the head and/or body off the vertical. They may have difficulty attaining and maintaining upright standing. This skill is particularly difficult when visual cues are absent or decreased. Static head and trunk posture while seated are sometimes impaired; dynamic sitting balance may also be impaired.

*Mobility: Mobility skills are manifested as veering toward one side while walking, ataxic gait, and falling or stumbling, particularly on uneven surfaces. Load compensation skills are impaired. Clients may need to use light touch to improve orientation and stability.

*Coordination: Dual-task performance skill is decreased.
*Energy: Routine tasks take more energy than usual, and endurance is decreased.

Appendix 5. Examples of Performance Patterns Affected by Vestibular Impairments
*Habits: Skill components of habits may be disrupted, and performance efficiency may be reduced, increasing the cognitive load and increasing the difficulty of performing habitual skills that were previously easy to perform (e.g., basic activities of daily living may have to be performed with modifications).

*Routines: Due to effects on performance skills, routines are less efficient and may need to be changed or abandoned altogether (e.g., hair washing may require supervision for safety and may take too long in the morning before work, so the client’s morning and evening routines may be changed).

*Roles: Some roles may be reduced or even abandoned, with consequent detrimental economic and psychosocial effects (e.g., clients with Ménierè’s disease may have to leave their jobs).

Appendix 6. Examples of Context Affected by Vestibular Impairments
*Physical: The physical environment may require modifications for safety (e.g., installing bathroom grab bars), or the home environment may require significant change (e.g., removing throw rugs, changing lighting patterns).

*Social: Misunderstanding of symptoms and problems by family, friends, and significant others may lead to hard feelings, reduced participation in socialization, changes in preferred social environments. These problems may occur due to decreased self-confidence, fear of falling, and a history of falls.

*Spiritual: Falls, vertigo, decreased concentration, and decreased ability in dual task performance, which all lead to decreased performance in vocational and vocational activities and decreased participation in the community, can cause decreased sense of self-worth, self-doubt, and decreased joy in life.

*Virtual: Visual motion sensitivity may lead to avoidance of virtual environments.

Appendix 7. Examples of Activity Demands Affected by Vestibular Impairments

*Timing: Tasks may take longer than before.

*Space demands: Lighting, flooring, and support surfaces may have to be changed.

*Social demands: Reduced social interaction per task may be required due to reduced tolerance for auditory and visual noise.

*Required bodily functions: Reduced function of vestibulo-ocular reflex, vestibulospinal reflex, and reduced spatial orientation skills all affect functional performance.

Appendix 8. Examples of Client Factors Affected by Vestibular Impairments

*Mental functions: reduced attention skills, reduced ability for dual task performance

*Sensory functions: reduced vestibular function, sometimes reduced auditory function

*Neuromuscular functions: reduced postural control, reduced dynamic visual acuity, impaired gait

*Vestibular labyrinth: In some instances, structural abnormalities in the physical labyrinth may be present, but these features cannot be observed; they may only be inferred.

*The American Journal of Occupational Therapy

Downloaded From: http://ajot.aota.org/ on 08/11/2016

vestibular.org

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 vestibulardisorders.org

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
2014-11-25 08.55.00
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 (www.vestibular.org), 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!

 

https://vestibular.org/

Into the Great Unknown… Part 1

The week following the Retreat flew by so quickly and I was ready for something different. I was feeling optimistic after my  time away, now I wanted Mike to relax enough, that he felt might feel the same. As I packed for our upcoming trip, I realized, just how long it had been since we had ‘just us’ time. It had been a really long time…As many of you know, dealing with an ‘invisible’ illness takes a toll not only on us but our loved ones. It takes a toll on our health, our wealth, and our careers. It takes a toll on our relationships, testing them to their limits. I’ve since learned many relationships don’t survive,  I am just so blessed with my husband. Was he always this way? The simple answer is no, but he was willing to learn. The ‘old’ me had done it all. For all those years. I raised our children, I cooked gourmet meals for the family, I kept the house, paid the bills, I sewed and mended clothes, and I worked (or used to). Are you seeing a little OCD in me? I’ll admit to that, but only because I have given up on most of this philosophy. I realized if I just lowered my some of my OCD standards, I could be happy again. This was my mindset as we took off for some ‘me’ time with my man.

The trip there was uneventful. It was the usual desolate landscape from West Texas into New Mexico, but we enjoyed out music and talked the entire way. It was wonderful for a change! It becomes scenic about an hour outside of Ruidoso and the mountains come into view. It’s also the beginning of the twists and turns to get up into the mountains. I began gripping the armrest as I felt Vertigo hit me. Ugh! “How much longer?” I whined to Mike. “We’re almost there”, he answered with his usual patient voice to me. We arrived just as darkness hit, so he told me to just wait in the car while he got the house turned on, not a problem! It is a 4-hour trip, but with a Time Zone change, I felt it was an 8-hour trip!

We planned only true laziness and I brought meals from home, just reheat and eat type foods. I plopped down on the couch, as Mike put the beef stew on to heat. I turned the TV on and caught a glimpse of headlights pulling up to our place. No way! Only our family knew where we’d be, so I thought maybe the neighbors were in town too. Then I saw a bouncing light coming towards our house, then up the long stairway to the house, then they were on our deck. BAM! BAM! BAM! on our door. To me (and I do admit to being scared of the dark), it sounded just like a Policeman pounding a door prior to a bust! No, I’ve never been busted! I’ve never been arrested, gotten a ticket or anything of the sort, but I do watch ‘Cops’ on TV. I was terrified by the ‘knocking’, but Mike answered immediately.

“Are you Mike Byrne?” a local Police Officer asked. What is going on? Now I get up to see. “Mr. Byrne, your family has been trying to reach you. Are your cell phones working?” he asked. “Uh, yeah I guess they are, there’s no phone reception for about 2-3 hours…Why? Is something wrong?” Mike asked. I check my phone and it was ‘dead’. The officer’s voice tone was giving me a ‘feeling’ I did not like. “Yes sir, our phones are both dead, what’s up?” The officer repeated our families had been trying to reach us for hours as he gave Mike his personal phone to call his dad. He answered with some of the worst words a parent can hear…’Your child has been in an accident’ words…

I watched the color leave Mike’s face as I ran out the door. I clung to Mike as we listened in horror. We heard what he was saying, but it was too difficult to process immediately. It was our daughter in Dallas. She’d been in a head-on collision. I remember crumbling to the ground, sobbing uncontrollably in total disbelief. His dad told us she was ‘airlifted to the Trauma Unit of Parkland Hospital in Dallas, that it was a high-speed collision and her injuries were life threatening’. It was all just echoing in my head and trying to make sense of this. It made NO sense! All I knew was, we had to leave, now! I don’t remember getting up and going inside, but the next thing I was doing, repacking and dumping food and plugging up my damn dead phone. I wanted this to be a bad nightmare, to just wake up and life would be as it was. Seeing’s Mike’s face again, I knew it was real. “They’ve already done surgery on her, but they don’t think they can save her right foot Margaret…” his voice trailing off. We have never packed so fast but we had to wait for the phone to charge, which sounds so stupid now. Who doesn’t have a car charger for their phone? Well, we didn’t. The only reason we had a cell phone back then, was for emergencies (like me stuck somewhere or I’ve broken another bone), unlike today, never going anywhere without one, and always with a charger. Once the phone had a partial charge, we took off, into the darkest night of our lives.

Our first stop was to buy a car charger. It was a cold, black, moonless night in January. We’d just driven 4 hours to Ruidoso, now headed out across the barren back roads to Dallas, 6 hours away. I turned my cell phone on to find 9 missed calls and just as many voicemails. Mike’s dad, Sarah’s new in-laws, her husband, and my parents. I was feeling sick at my stomach, I wanted to faint, I wanted to wake up from this nightmare! I was shaking as I played the first message, it was from her husband. He sounded numb as he told us he ‘didn’t know all the details, but on her way home after work and after dropping him off, a car crossed the median’. The other messages only became more dismal…’Where are you two? Sarah’s in another surgery…’ to ‘She still alive but has bled out’…I couldn’t just listen, I had to call her husband. He still had little information and was likely in shock. I clutched my stomach, I was going to be sick, it was just all too much. Mike gave me an empty cup and said he wasn’t going to stop. It certainly wasn’t the first time I’d be sick in a cup or bag. I stared out the car window into the pitch black sky and began the longest Prayer of my life…

 

https://vestibular.org/

 

 

The Sneeze…

Don’t Mind Me, I’m Just Holding Up the Wall…

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…