What The Hell Is That Smell?

Hyper ‘smell-a-vision’, as I call it, is something that occurred when I became ill with the Vestibular Disorder. As if the Vertigo, the vomiting, and the falls weren’t enough, my sense of smell became alive. I smell everything now, real or imagined! Now, I have more of a smell/gag reflex and it drives Mike crazy. “Hell, I’m the one living with this!”, I remind him over and over. Food was a huge part of our lives, we loved cooking gourmet meals together, dining at fine restaurants with a good bottle of wine. That was then, this is now. Is this a side effect of the original infection? If it traveled to my inner ear (in your brain!), why not to the Olfactory System? Who knows, but it does affect my life. It affects my appetite. It affects my willingness to go out where smells might be, as silly as that sounds. I’m weird, I know.

I’d noticed this funky smell in my kitchen recently every time the dishwasher ran. I use vinegar as an inexpensive rinse agent for the hard water in our area. So this was a vinegar AND another funky odor smell. I thought I’d try a dishwasher cleaner, that would surely resolve it. No, it was still there. Maybe it was the disposal? We don’t even use the garbage disposal, but maybe our grandsons put something in there. So, I bought a garbage disposal cleaner (how many different cleaners do they make?). And…it’s still there! I persisted with the “I smell something funky in my kitchen” rant. Mike looked at the dishwasher and said, “It just has two screws holding it in, I’ll look at it on my days off”, which brings us to today. His ONE day off this week due to a change in schedule.

Well, to begin, the dishwasher had SIX screws holding it in, not jus two. After removing the last screw, the footplate fell off and dark water flowed out. GAG! We weren’t prepared for that! The scatter to locate our old ‘ring style’ mop and bucket looked like a Three Stooges episode, us all running in different directions! I use a steam mop now, happy to be rid of that mop, so it was finally found in the shed outside. Mike partially pulled the dishwasher out and stuck the mop in. The mop came out very dirty (GAG!), but only damp. I shone a flashlight in the cabinet. “I thought there wasn’t water in here Mike”! He comes back quickly, “There’s wasn’t”! “Mike, there’s water all over the floor and it’s still coming in”! I’m such a help with my flashlight, doing nothing but pointing out the horrors yet to be known. There was water, though… He pulled the dishwasher completely out.

We mopped up the water, but where was it coming from? With the dishwasher out, he could check all the hoses and hookups. Thank God, I have him to do these things, as I don’t like’dark and dank’ places (does anyone?) and lacking the funds for a professional to fix this. One by one, he carefully cleaned, dried and checked each hose and connection. They all appeared fine, so he did a ‘test’ run using only the rinse cycle. It made sense at the time…The cycle completed and began to drain, we gathered around as if it were the most interesting event ever! Everything seemed to be working properly. The question remained, where did that water come from? Ask, and ye shall receive…”Mike! Water is running back in”! His response contained way too many expletives to write, but let’s just say, he wasn’t happy…

Upon closer inspection, we realized the water was coming from behind the cabinets! Behind the cabinets is a sheetrock wall and behind that wall, the main plumbing…This is going to be a MAJOR job! We (Mike and our son, Lewis) will have to fix it, working under the sink, inside the cabinet, to cut a hole through both the cabinet and the wall to discover whatever else awaits us…THIS is how Mike spent his one day off, then had to leave it in disarray, until a later date…I have much more important things going on at this same time. My dad. I will be driven back to his house for a number of weeks on Monday. Sometimes, when you think you have it bad until something worse happens, it puts life in perspective. This is one of those times. I have no doubt it crossed Mike’s mind, “I wish she’d lost her sense of smell instead of her balance”. But no! I get a hyper sense of smell from…a virus? Explain that, if you can, because I sure can’t!

This was just a ‘day in the life’ of post. Would it be any different if I weren’t dizzy on a daily basis? Of course not, but I might not have this ‘Bloodhound’ nose, though. Am I glad we found this out sooner than later? I suppose. Is there ever a convenient time to have a disaster happen? As it stands now, we are without kitchen plumbing. Dishes are done in two dishpans in a bathtub, for now. So wish us luck learning how to DIY plumbing, sheetrock repair and reinstalling our dishwasher, we’ll need it!

I just had to know what that funky smell was…

When Push Comes To Shove…

It might appear I’ve ‘fallen off the earth’ or something, not posting for so long. I put  ALL my health issues on the back burner, so to speak, in order to help an aging parent for awhile.  I’m not putting my needs second, necessarily either! I’m taking care of myself but I am pushing myself outside my usual boundaries. It is good for me, or so they say! In doing so, though, I realized something interesting. When ‘push comes to shove’, I actually still can do more than I give myself credit for. When a loved one needs me, I’m there. Period! There’s that caregiver role in me since birth. Even if another sibling came, I’d still be here (yes, I think I’m all that)! But right now, I’m stepping outside the comfort zone of the four walls of my home.

Mike drove me here (and delivered me like a piece of luggage) before he returned home. I’m used to being driven around by others. I choose not to drive myself places. I have two places I will drive myself at home. Of course, they’re doctor’s offices and very close to home.  I can take ‘back roads/streets’. But driving myself via highway…Absolutely not! Too much space, too many vehicles, too many lines, too much fast moving peripheral visuals…I prefer to be a piece of luggage. Mike will be back to retrieve me in a few weeks if all goes as planned.

Yet now, I am the one driving my parent to their appointments via ‘back roads’ that is! It took a bit (I think quite a bit) of explaining to them all the things I can’t do or prefer not to do. Examples such as…’no curving roads, no roads that go uphill, no roads that go downhill’…I take the back streets. It is a route I could drive comfortably. We have to leave the house earlier as it took longer, of course, but my parent is both gracious and grateful for my help.  I love to take care of others, it gets me ‘outside of myself’ for awhile. Doing this does make me tired, no doubt, as my brain is working overtime. I take the time to care for myself by taking a nap daily, but baseline, I am pushing myself to do my new personal best. Temporary as it may be…

I also needed to do a flip-flop with my (un)usual night/day routine to accommodate a ‘normal’ day’s appointments. I literally do not remember the last time I was in bed at 10:30 (well, I tried to go to sleep then)! I’m up every day by 8 am. I forget how much I love the mornings…I cook our meals, very simple but very healthy. I’ve really surprised myself with all I have done, but there was so much more I wish I could have done. I tend to compare myself to my sister who possesses an internal drive like no one I’ve ever met. She would have cleaned the entire house. She would have done some yard work, and cooked a month’s worth of meals! I did about one weeks worth…I’m not kidding. She has a seemingly endless energy source…I  remind myself, ‘that’s how she is and this is how I am (now)’…It’s not a healthy way to live, comparing ourselves to another who isn’t living our lives.

I still have days I struggle with the limitations of living with a Chronic Vestibular Disorder. On the trip here, I envisioned myself going for walks but the more I thought about doing it alone…I couldn’t make myself do it! My voice of negativity crept in, “What if I get dizzy and tripped”? “What if I fell”? “What if I sprained my ankle”? “What if I fell and couldn’t get up”? After all, I’ve had all these happen before. I talked myself right out of that activity! I tell myself over and over, “I am doing everything I can do…today…and that’s okay”!

The things I was able to make myself do were, get them to their appointments on time, drive them home, make our lunches and dinners, and the biggest thing I conquered was the grocery store…alone! I parked next to a basket return area and grabbed one right away. I gripped the handle so hard at times, my fingers would go numb. I knew my body and brain were overloading, so I just move to the side and act like I’m doing something so important…Time enough to breathe a few deep breaths before heading on…As I said before, I know this type activity is good for me, even therapeutic, but I hate it!

After these few weeks of ‘pushing’ myself, I’m feeling it! I’m glad I’m here, helping my parent in the way I am able to help. It’s not the same way ‘others’ might, but that’s fine. I am happy doing it MY way! I hope you too, will feel, enjoy, and appreciate your own victories, be it large or small, it’s still a victory! Go ahead, give yourself a ‘pat on the back’, you deserve it!

The Decision…

In the above picture, the story goes, I said to one of my cousins, hands on my hips, “You’re not the boss of me”! Oooh, Little Miss Sassafrass!  What a little spitfire! What happened to her? I search deeply into my eyes for that Margaret, with that spark, but what looks back are eyes that have been through a lot, seen a lot. Too much for just one person, one family to have lived through in 43 years of marriage. Mike is my main caregiver, yet has survived 2 near fatal car wrecks, the first was a rollover with ejection from the truck. The second, a drunk driver ran into a crowd hitting Mike. He was drug under it for 75 yards. I watched in horror as he disappeared into the darkness. We had just been sitting and talking…Here’s an example of how different we all are, I wound up with PTSD and Mike has nothing after that experience. I wish my Vestibular Disorder was the only stressor in my/our life, but it isn’t.  I wish so many challenges hadn’t been put upon us, it wasn’t fair, it wasn’t right. But, if I hadn’t gone through them, I wouldn’t be who I am today, either. I struggle to find my identity, my new identity.

So much time has passed since my diagnosis in 2003, you might think I should just have ‘accepted’ it. I ask you, would  you just accept it? Don’t you think hope would remain? We are all survivors in this game called life, in one way or another. For some, just to wake up another day is something to be celebrated, and it should! Others, like us, too often wake up with a feeling unrested, having a ‘foggy’ brain and the sense of uncertainty (will I have symptoms today?). If we’re lucky and it’s a no symptom day, then, we celebrate! If we wake to a world off-kilter, the feeling is more  one of dread. I chose hope and I am a person of Faith, so I hang in there another day. In all this time, though, Science and Research chugging along, making progress with certain Disorders and continued confusion with others. I feel the biggest confusion comes from doctors  not taught nearly enough about the Vestibular System (the 4 Systems involved). I could never have become a doctor, their responsibilities are mind-numbing! The truth is, if something doesn’t change, there will only be more people in my position. Then, they too will be forced to make a decision.

The decision to go on Disability was one I did not take lightly. First, and foremost, I felt shame. I worried what others would think about me. I know people using the ‘system’, people who didn’t really need it and that pissed me off. Obviously, I didn’t want to be perceived as one of ‘those’ people. It was seven years of working to ‘get well’. Seven years of keeping up my Continuing Education and license, because I was going back to work, after all. Yeah right! It was seven years of learning everything I possibly could about both my Vestibular issues and the Fibromyalgia diagnosis. I have no doubt, I had Fibromyalgia for over one decade before diagnosis. Their overlapping symptom? Dizziness. I changed so many aspects of my life in this attempt. I changed my diet (just a healthier diet), my sleep habits (sleep hygiene), and tried to lower my stressors (never happened). I started numerous exercise programs, but my balance continued to hinder my success with anything but yoga (Downward Dog is out). Discovering the Wii did more than just games, I found the ‘evaluation’ Wii used, addressed balance and it was fun! Hmmm…I need to reclaim it from the grandsons’ bedroom, bring it back into the living room. After seven years, I gave up the concept of returning to work and began the process to apply for Disability. Was I one of those people now? Oh, what shame…

I did have help with the massive amount of paperwork, not a Lawyer but a Social Worker. I’ve heard nightmare stories of people’s attempts to obtain Disability. Lawyers are puking out  television commercials to ‘help’ you get what’s needed, what you and I spent our lives working for. Every paycheck, it was taken out of our checks, like clockwork. What really sucks, what about all the women who chose to be a stay at home mom? I was one for 15-years, and I loved it. I took pride in doing it, but it left me with huge empty chunks on my Social Security. $0.00 is your value while raising children here.  In the USA, to qualify for Disability, it must be ‘proved’ that you will never be able to return to work. Now that, was a big pill to swallow, never…really, never? Actually, you can try to go back to work with a 9-month window allowed.

For me, I was approved the first time and paid  3 months back payments (don’t get mad!). I have no idea what was done (or not done) differently, but it was not the stressful event my mind had imagined. I feel for those who are having difficulty with the process. Because when you feel like we feel, we do not need this extra stress. Part of the problem is political. I feel our money has been tapped into one too many times.

My Vestibular issues aren’t my only health issues. I also deal with Depression, Anxiety/Panic Disorder, Fibromyalgia, Sleep Disorder, IBS, Ulcerative Colitis, Reflux, with the PTSD and Vestibular Disorder to round it all out. Oh, and I also had Thyroid Cancer in 1994. I was still in school when the doctor called with the “Margaret, you have Cancer”call. I had 2 months left to complete my rotations, for school to be over! I gave him the, “I’m too busy right now. I’ll get back with you” answer. Stupid, very stupid I know! I had the surgery 2 days after sitting for my Board Exams. Putting this all down on paper it’s shocking to even me! It’s crazy, I know, but some of us are just that lucky…I want to scream at the top of my lungs to all my illnesses, “You’re not the boss of me“!

 

 

http://www.vestibular.org

 

 

 

 

Still Working On Team OT…

For the past few months, I’ve worked diligently on VRT, but using  Occupational Therapy philosophy this go around. There’s no ‘miracle’ to report, but what has changed is my activity level and that can’t be ‘bad’. I’m also, using a mindfulness approach, which simply put I am forcing myself into really thinking how I go about my day. I’m working on my posture. I’ve talked a bit about how OT looks at every area of our lives and how we do it. I’ve made simple modifications at home. Also important is energy conservation, considering how much energy it takes for say, showering or running errands. Do you really have enough energy on this particular day, to do both tasks? Showering and washing my hair are very exhausting tasks for me, I know, it seems so simple, right?  I’ve done all these things. I consider these things now, throughout my day.

Yet, I still can’t invert my head without dizziness. Think through your day. How many times do you bend over without a thought? “What IS that under my bed”? “Do I really want to know”? Bend over to wrap a towel around your wet hair? Bend down to dry your lower half? Doing a somersault? Okay, I’m joking with that last one, but the list goes on. Just take a count of how many times you bend over in your daily life? It’s probably many more times than you think. How might you handle it?  One reason I’m working on my posture is due to an accommodation I’ve picked up from the beginning of my Vertigo. Accommodation is something we do without consciously thinking about it. We do it in order to complete the task. An example of accommodation: In a seated position, you need to reach for something above your head, just out of reach. As you reach, your hip (on the same side) raises off the seat.Try it yourself, you’ll see. Besides, I kinda like my 5′ 10′ self!

Since I’m unable to hang my head down when bending over, I began hyperextending my neck, which is not good for us. It pinches Cranial Nerves causing numbness, tingling and more in my arm. I recently discovered I have two Cervical Vertebrae that are so offset, the Neuro-Surgeon thinks I likely ‘broke my neck as a child and don’t remember it’. Really? Yes, I still live in the same place as my misdiagnosis of a Vestibular Disorder. No, I’m not having anything done at this time for my neck as he wanted to use surgery to repair my ‘broken neck that I don’t remember’. What happens when I hyperextend my neck is distressing. My left arm goes completely numb. I can still move it, use it, but without feeling what I’m holding, accidents can/will happen. I began using neck exercises from an early round of PT, no improvement. I’ve seen my MRI pictures and there are two vertebrae that, at some point, will likely require surgery. It won’t be done here, though!

Some of the modifications I’ve made to my home:

  • a shower chair is essential! I use it in the shower and when my husband colors my hair (don’t be a hater!)
  • my furniture is arranged for both tactile cues and a place to plop should I become dizzy
  • food prep: I sit at my kitchen table
  • laundry: I sort clothes with my feet. Then, in kind of a football stance (bending at my waist with neck extended, which is not good for us! I load/unload washer/dryer.  I’m working to get my husband to build platforms for the washer/dryer set, then hardly any bending would be required
  • I’ve recently begun using a cane (VERY reluctantly!), after a recent situation I couldn’t get out of, my husband’s medical testing. I had to maneuver some very difficult solid white hallways. White ceiling, floor, and walls. I had to take 2 breaks and had non-medical employees ask if needed help, very nice! I am using one from our daughter’s accident. It’s functional, which translates to ugly. If I’m going to start doing this regularly, I want a ‘pimp cane’!

These are just of few of the modifications I put into place, making my home safer, as I do believe seven broken bones is enough for me.

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

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…

 

vestibular.org

Appearances May Be Deceiving

For all the women still able to, or having to work…Just how exhausting is it getting yourself ready and putting on your ‘happy face’ for work? Exhausting! High fives to all who blow-dry or curl their hair! You GO, girl if you put makeup on! My dad’s mother was a cosmetic buyer forever, and watching her ‘put on her face’ was the source of many a fight between the 4 siblings (even my brothers wanted to see). It was a ritual. She was a beautiful woman who taught me the importance of good skincare, which I continue to this day. Clean, clear, well-moisturized skin goes a long way in my book. I can’t say, honestly, that I look sick any longer (most of us probably don’t). I look sad, but not necessarily sick any longer. I look tired. Who of us gets the kind of sleep we once had? I know at times, I probably look mad (I am!). At this moment, I look older than I’d like, due to being too tired to color my hair (I have a white halo effect going on right now). Who am I kidding with that? My husband took over that job a few years ago! I couldn’t even imagine going through my old morning routine! It was minimal I assure you, but I get tired thinking about it.

Before being hit with Labyrinthitis, I didn’t have trouble sleeping. I was SO a morning person! It was easy to wake up without an alarm, jump in the shower, brush my teeth, etc. I rarely used a blowdryer and occasionally, minimal makeup (hippie chick, remember?). I’d wake up eager to go to work, how many people can say they LOVE their job like that? I was the person you ‘hate’ because they’re so perky in the morning, even Monday mornings! I laughed, joked, and played throughout my work day (keep in mind I worked with children!). I was always baking something yummy (appetizer cheesecake anyone?). I baked fresh bread, cookies, and such. Yeah, I was one of those…I get it now. I get how irritating it can be to see another so perky and chipper when you feel horrid. I miss that old me… Pssssst…You’re still in there, Margaret! To all of you, YOU are still in there, too!

My daily life now? I sleep well, but only because I take Ambien. I have to ‘weigh out’ each day, just what I can accomplish, in OT we call it Energy Conservation. An example: My hair needs to be colored and even though Mike does it for me, I still have to sit there with my head in bizarre positions. I shouldn’t gripe but I have a lot of hair, so it does take quite a while to do it all (maybe 1 1/2 hours?). Then I have to get that crap all out! I have to wash my hair twice, condition it, wash my body, dry off, and put lotion on my 5′ 10″ self…That’s usually it! I’m done! Totally exhausted, but my hair looks great again…Even though I claim my hippie side, I have enough BareMinerals makeup to fill a professional style bag! I have false eyelashes (antiques by now!) in there! Every once in a while, I’ll pull it out, dust it off and just look at it all…BIG sigh…I remind myself, “But your skin looks great”…

I was once known for my fashionable dressing. Now? I live in clothes that make it ‘appear’ I work out, like yoga pants and a cami top…day in, day outBORING! I am quite capable of making my clothes, I’ve sewn since age 7. Being so tall, I learned to piece together patterns. From there, I learned to make my own patterns. I worked as an ‘In-House’ Designer for a clothing manufacturer. I had a Bridal and Evening Wear business for 10 years, where I showed my Original One-of-a-kind creations with a Designers Guild twice a year. I designed our daughter’s Wedding Gown, all 9 yards of fabric with 748 gold beads and 432 pearl beads, thank you very much! And I wear yoga pants and a cami top and sometimes, I have difficulty deciding which color to wear…Sigh…

When I left my job, there were many changes going on…They were discussing us beginning to wear uniforms, the horror!Where’s the fashion sense in a uniform? We were just beginning the switch from handwritten Progress Notes to Computer notes. I HATED it, absolutely rebuked the idea to the end! Here in the USA, it is Occupational Therapy that is fighting to keep Cursive Handwriting ‘alive’. My mother ingrained all her children the importance of handwriting. That was a huge part of my job, teaching handwriting in the school system. Now? I live on my laptop and have become quite competent with the 21st Century contraptions…I feel lost without my laptop now, so very odd to me, a computer would become my social life! The truth is, sitting here as I am, secure where I am, I don’t feel dizzy, maybe because I’m in bed?

With the modifications I’ve put in our shower (a shower chair and a grab bar), there are no problems in this aspect of getting ready for my day. Minimal as my preparation is for an outing, there are still going to be one of those days every so often. This old hippie will tell you, “You are gorgeous! Just the way you are. You don’t need makeup to be beautiful, as you already are beautiful. Haven’t we been through worse than being seen without hair and makeup?” I encourage you to just try going makeup free for a day… Just your stunning clean, moisturized face and a big smile! For those who do wear makeup daily, you are a stronger person than me, truly! I am not anti-makeup by any means, either. It’s just more work than I am willing to do…Do you feel you ‘have’ to wear makeup before going out? Do you wear it even when not working or going somewhere? Has your mate never seen you without makeup?

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.

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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 (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/