AAA = Acknowledge. Accept. Adapt

“The healing power of even the most microscopic exchange with someone who knows in a flash precisely what you’re talking about because they experienced that thing too, cannot be overestimated.” ― Cheryl Strayed, Tiny Beautiful Things

Unfortunately, the opposite is just as true.  I discussed in an earlier post the frustration experienced when an individual makes a well-meaning attempt to sympathize by saying something like "Oh, I have those little dizzy spells, too" or "I have a friend who had the same thing and saw a doctor.  He's fine now."  Please understand that there are many types and levels of severity of balance disorder and, while I am pleased that some may be able to get relief, it is not always that simple and such statements tend to trivialize the problem. Some of us must acknowledge, accept and adapt to our tilted world for the rest of our lives.

I am making progress in that endeavor.  I gave in and got a Handicap Placard so that I can park close and not have to try to dodge drivers while toddling through parking lots.  I have mostly given up grocery shopping and have begun to order online for delivery.  

My patio has been re-landscaped for ease of care to accommodate my lack of balance. 

I have come to the realization that I do well with routine.  When my natural thought processes are interrupted I become even more imbalanced and confused.  For instance, I awoke early one morning to find my friends on my patio to install my drip system.  With the water shut off and my routine disrupted, I couldn't think how to make coffee even though I had bottled water.  Once I remembered the bottled water, I nearly forgot to put the carafe back in place.  Thankfully, I caught it before I had a mess.

Driving to a business about 2 blocks from home,  my routine route was disrupted by construction at the intersection and, reading the sign that stated "Left lane must turn left", I stayed left to go straight through believing it to be right.  Not bad enough that I did it once, I didn't realize what I had done and thought that I was the only one who got it correct until I did it again on the way back.  I actually did the smack to the forehead "Duh" thing.

I have acknowledged and accepted that I can no longer drive in unfamiliar areas, after dark, when I'm tired, or with another person in the vehicle as I cannot be distracted in the least.  Consequently, I drive very little.  I do just fine so long as there are no detours on my route.

For those who may have wondered about any progress with the University of Washington trials of vestibular implants.  My attempts to become a candidate are ongoing.  It seems that both my doctors at University of Arizona Medical and the one in charge of the trials at UW have inept administrative assistants and letters, faxes, calls are not acknowledged.  An audiologist at UA was to follow up for me over a month ago and get back to me and has not.  I will see my UA doctor to discuss with him face-to-face in two weeks.

A couple odd, interesting challenges that happen to one who has suddenly lost word/sound recognition:  

I heard a beep that sounded like a truck backing up but not as rapid.  I walked my entire house and even stepped outdoors front and back searching for the source.  Because the volume never changed and the beep never stopped, I finally suspected a problem with my hearing aids.  With one out, the beeping stopped entirely.  I changed the wax guard and the battery, replaced it and there has been no mysterious beep in my head since. 

When I put my hearing aids in one morning, I heard a mechanical whir.  Believing that my old ceiling fan might need some attention, I turned it off.  The whirring continued.  I opened my balcony door to see if it was coming from outdoors.  It was not.  I walked across the room and realized that I had failed to turn off my new-to-me humidifier.  I have used it several nights but, because I had turned it on after my aids were out at night and had been turning it off before I inserted the aids the next morning, I had no idea it made such a noise.  I wouldn't be able to sleep with it running if I weren't nearly deaf.  A blessing in disguise!

I borrowed the title of this post from a comment on FaceBook by a fellow member of VEDA.  I still mourn the loss of my energetic, independent self and the demise of fun future plans, but little by little I am learning to  AAA = Acknowledge. Accept. Adapt

Things I Wish You Knew.

This author speaks so well for me:  https://vestibular.org/news/05-15-2014/3-things-chronically-ill-wish-their-loved-ones-knew.

"1. The grief we feel over the life we’ve lost may re-emerge now and then…indefinitely.
2. We can feel as if we’re letting you down even though you’ve repeatedly told us that we’re not.
3. Being chronically ill can be embarrassing."

She elaborates in explanation of each one of these revelations and calls this a chronic illness.  I had never thought of it in those terms, but, indeed, that is true. I am chronically struggling to balance in my slanted teeter-totter world and to hear precious voices, music, sounds of nature, sounds to alert me to danger.  I am chronically stressed and exhausted from the effort.  Yes, it is a chronic illness.  

My yoga class has taught me so much.   For instance, this morning, while preparing my simple breakfast, I noticed that my jaw was clenched.  I had not realized that there was so much effort involved in just moving about my kitchen.  I stopped and took a few deep yoga breaths, relaxed my jaw and lowered my shoulders before I continued what should have been a simple chore.

Those of you who have kept up with my blog from the beginning know that I have been tested twice for cochlear implants and, by FDA/Medicare standards, I have not qualified.  A new audiogram and VNG (balance test) indicate that I have lost slightly more hearing and balance on the right.  I now qualify for the implants, but I am told that there is a chance that the procedure might adversely affect balance.  As I am nearly equally imbalanced left and right side, I have chosen to not take the chance of disturbing one or the other.  I am still hoping to be selected to participate in a University of Washington study of vestibular implants though I've heard nothing in response to my application.

To my grandchildren, I am sorry that I cannot be the fun, active, energetic grandmother that I want to be.

To my friends, I am sorry when I must tell you "No, I'm just too tired." or "No, I can't drive there." or "No, I won't enjoy it because I don't hear well enough."

To my children, I am sorry that I have become needy and no longer independent.  I need you.  I need to hear your voice, to do little things for me, to know that you care.

NAMASTE.

BE THE BUTTERFLY!

Today is a new day... a new opportunity.   I received a number of responses to my publishing error and have responded to each. Blogging is therapeutic for me.  I tend to write when I am in emotional distress, then polish until I'm feeling and sounding more positive before I ever consider publishing.  My first emotional negative thoughts should never have been passed on.  With all the resultant offers of support,  however, I realize that I am negligent in not asking for what I need.  I also realize that it is not so much that I'm unhappy to not be able to do all the fun things that are happening around town but that I can't do them ALONE and, in many cases, it is unfeasible to try doing them at all.  I am still mourning the loss of my independence and, especially when not feeling well, it turns into loneliness and despair.

I recently watched a PBS presentation by Dr. Wayne Dyer who had impressed me years ago with his book "The Power of Intention".  I adopted his mantra with the belief that we are all part of a divine creation put here for a purpose and therefore  "I am creative, kind, loving, beautiful, expansive, abundant and receptive [to all that I need to fulfill my intention]."  In his latest book he discusses the need to be "willing,  determined, and fearless" in pursuit of your intention.  I have added those three words to my mantra.

 In addition, Dr. Dyer introduced a book called "Goodbye Bumps" which he co-authored with his daughter.  At the age of seven, she had facial warts. Medications and topical treatments had not been effective.  A doctor gave this little girl three choices:  Cut them out, burn them off, or (no doubt with tongue in cheek) she could talk to them and tell them to leave.  She, of course, chose the latter and each night under her covers she was heard telling her "bumps" that she loved them but it was time for them to go away.  They were gone in three days!

Sounds nuts, but I'll try anything.  "Goodbye, Oscy (Oscillopsia) and B.V. (Bilateral Vestibulopathy)."

My yoga instructor asked our class, while preparing for shavasana, to allow our minds to be either the butterfly or the fly.  Consider where a fly lands and lingers.  I choose to be the butterfly.

I'm Okay

My dear friends and family who may have gotten a blog post that I never intended to send.  Instead of "save as draft" I hit "publish" and deleted it immediately so that it isn't showing in my list of posts, but two of you so far have responded and I am embarrassed.  I was just having a bad day, not feeling well due to wind and dust in Tucson, and feeling sorry for myself.  Please don't take it personally and know that I am fine.  This too shall pass.

MY NEW RESOLVE DISSOLVED?

My new resolve dissolved?  Not entirely, but I have made zero progress towards my weight loss goal.  I have been active six mornings each week with fitness walks, yoga and fitness classes.  I am left with so little energy that I can't even think about meal planning and cooking.  Prepared meals and restaurant meals are too high sodium and dinner out would mean driving after dark.  Salads are great but I'm too "lazy" to shop and chop fresh produce.  Consequently, I've been eating a lot of whole grain cereal, unsalted natural peanut butter (on bread or crackers, of course), yogurt, eggs (and toast), fruit and mini-tomatoes.  Not a bad thing, but apparently not enough and too high carb.  Gotta work on that.

I was doing two weekly Silver Sneakers exercise classes and have decided to drop one.  I found myself getting dizzy and nauseous trying to move while watching the instructor move.  The other is not quite so aerobic; not as fast paced, but just as effective if not more so.

My once-weekly yoga class is so-o-o wonderful.  I leave the studio feeling as relaxed as a limp noodle.  I have begun my own practice at home and, though I am not there yet, I hope to work up to a daily routine.







Before my first debilitating episode, I was getting weekly chiropractic adjustments to maintain the alignment of my spine and prevent lower back pain.  I felt great during that period; even getting temporary relief from my mild asthma.  My chiropractor told me that her manipulations open up everything.  My nuclear-physicist son said once about having his first and only chiropractic adjustment, "That's not science."  He obviously didn't enjoy having his neck cracked.  It really does take a lot of faith and trust in your chiropractor to allow him/her to do that.  My chiropractor retired. I saw another for a couple visits and did not have the same trust so never had an adjustment again.  I recently read an article purporting that such manipulations irritate the vestibular nerve and can be the cause of disorders such as mine.  Perhaps I stopped too late.

On the other hand, a professional masseuse manipulates muscles and finds knots and pressure points and, in a gentler and less aggressive way,  achieves even better results.

With a gift certificate from a dear friend, I had the 2nd therapeutic massage of my life a month ago and booked three more.  My massage therapist truly has magic hands that find that tight nerve up the back of my neck and lower my shoulders from their strained tense trying-to-hear-and-balance position.

When Publishers Clearing House knocks at my door, I plan to hire my own personal masseuse and chef.







Upon my neurotolgist's advice, I have begun the process to establish candidacy for a study regarding newly developed vestibular implants; similar to cochlear implants but designed by a University of Washington otolaryngologist to correct balance impairments.  If chosen, it will mean travel back and forth to Seattle.  Wish me luck!

TREES SHOULDN'T JUMP!

I began this blog, not only to educate friends and family about my condition, but to share my experiences with others who may be in the same situation; to give them the comfort of knowing that they are not alone.  I have been too shy to share it with the world and have not actually published it.  However, I think it is time.  The blogs that I have read on the VEDA website seem so professional that I am intimidated fearing that mine will seem extremely amateurish in comparison, but I'm about to take the plunge.  For those reading it for the first time, while I encourage you to respond with your experiences and advice, I hope that you will read from the beginning and not respond until you've caught up with me on this adventure of discovery.  I am learning as I go.  

A word of advice when learning of someone's VD (That's Vestibular Disorder…not the other one.  My cousin with MS came up with that little joke and we can't help giggling about it.), please don't say "Oh, yes, I get those little dizzy spells all the time if I stand up too quickly."  What you are doing is trivializing the problem; not empathizing.  Consider what it is like to have those "little dizzy spells" all day, every day, with every little movement you make.

I had been without my left hearing aid for over a month.  It was sent out to be refurbished and got lost.  Turns out it wasn't lost at all, but, because it was purchased in a former surname, the records carried that surname and it ended up on a shelf at my audiologist's office unclaimed.

Because the vestibular system is aided by the ears and I temporarily had only the use of one, I had become increasingly wobbly.  The oscillopsia (everything moves with my every movement) became worse and, on my fitness walk, glancing up at a tree along the path and back down again the tree seemed to jump.  Sidewalks wave up and down in front of me.  My world is a bizarro world!

If you have VD (tee-hee) and haven't gone through Vestibular Therapy, I encourage you to do so and to practice your exercises often.  It is vital, though exhausting and often nauseating.

I sometimes feel that, if I don't push through and do certain things for myself rather than asking for help, I am surrendering to this "thing."  For that reason, I had not considered requesting a handicap placard or plate for my car.  I still drive but only during daylight hours and only in familiar areas.  I have almost been run over a couple times in parking lots recently because I can't move out of the way fast enough.

(Come on!  Move it, Granny!)  I finally "gave in" and ordered a placard to limit that risk.

HAPPY NEW YEAR!

First, a reminder that the original intent of my blog was to educate family and friends so they might have a better understanding of what this "thing" is and, hopefully, how to help me to cope.  If one doesn't know or remember, for instance, that, due to cochlear degradation, I can only understand what is said if you are speaking directly to me in close proximity, both you and I will become extremely frustrated.

An article noted early in this blog, discusses the fear that haunts many vestibular disorder patients that they may be in the early stages of alzheimer's disease or senility because of mental fogginess and embarrassing faux pax.  The consensus is that the balance impairment requires so much concentration that the mind tires easily.

Recently, during my fitness walk, I was rambling on to my friend about something and suddenly said "What the heck am I talking about?"  I realized that what I had said made no sense; that I had confused people and places in my mind sort of like what often happens in a dream.  It was a frightening realization.

I have had moments where I totally miss a common word, as we all do, just as I'm about to speak remaining blocked and unable to get back to the thought at all.

I borrowed a pen at lunch a couple weeks ago and couldn't figure out how to work it.  I stupidly kept twisting and pushing and turning it around until I was told that the cap comes off.  DUH!

I know that I have asked my bachelor grandson on two different recent occasions if he cooks at all.  Much later, I remembered that I had heard his answer before.

I waver between laughing at myself and being frightened to the point of tears.

I had a wonderful, but exhausting, Christmas with family in my home.  As mentioned in previous posts,  the concentration needed to maintain balance and the need to strain to hear zaps my energy.  For that reason, preparing for company for the holidays was a two-week endeavor.

I laughed hysterically when, while making roll dough, I lifted the beaters of my stand mixer slightly out of the bowl while it was still running to fling the dough off.  When that wasn't working, intending to turn it off to lift them entirely, I mistakenly turned it to high and flung bits of dough everywhere…my glasses, the backsplash, the window shade, the floor…

Living alone, one develops routines of daily functioning.  Living alone with a handicap, one adapts the home to those routines.  My furnishings are all strategically placed for watching TV with ease and to eliminate any obstacles that I must step over or around. Lamps are connected to outlets operated by a wall switch so that I don't ever need cross a dark room.  I keep a "grabber" nearby so that I needn't get on a step-stool to get something from an upper cabinet or bend over (which sometimes results in tumbling all the way) to pick up something I've dropped.

Christmas morning was joyful.  I loved spending it with grandchildren; watching them open presents.  Afterward, though, the room was strewn with wrappings, gifts, boxes that would have required balance to step over or around.  They obviously forgot that there was an elderly toddler in the house.  I just sat at my dining room table until the floor was cleared because I feared falling toward the TV on one side or the glass-top coffee table on the other.

Being the last one to bed and turning off lights, I was momentarily trapped in my kitchen.  The living room lamp would not turn on with the wall switch so that I could cross the room and turn it off at another on my way to my bedroom.  It had been turned off by the lamp switch.  Of course, it was a simple remedy.  I simply turned the kitchen light back on to give me enough light to cross the room to the lamp, then back to the kitchen to start over again.  Those who haven't read my blog or been around me often aren't tuned in to my needs.

I spent two days looking for my "grabber" because it had been used, probably to retrieve a Nerf bullet,  and not returned to its usual resting place.  I have a rolling chair at my little kitchen desk.  Without my grabber but with a bit of ingenuity, I rolled myself to the item I had dropped and kicked it near a cabinet so that I could hold on when I bent from chair level to retrieve it.

I'm grateful to my son and grandson who came by NewYear's Day to help me take down and put away the tree and ornaments. It will take another week, at my one-"major"-thing-a-day pace, to replenish groceries, wash linens, etc. and put my house back in order.  But, it was well worth it!

My new resolve went by the wayside over the holidays, but, with the encouragement and companionship of my walking and yoga partners, I am already back on track to make 2014 a year of major accomplishments.

 

NEW RESOLVE

I will begin yoga practice for proper breathing to aid balance.   ✅
(I bought a 10-class Groupon with a friend and have attended several with the plan to do one session each week.)

I will get back to strength training to build my core muscles and those around joints while continuing to walk 4+ miles three times a week with a friend.   ✅
(Did a Silver-Sneakers chair aerobics class and plan to continue and add a Tai-Chi class.)

I will improve my diet to eliminate inflammatory foods and reduce sodium to improve my overall health, energy, and appearance.
(I've read "The Hunter/Farmer Diet Solution" by Dr. Mark Liponis of Canyon Ranch.  I believe in him and will begin to eat according to his recommendations.  As a successful business woman, I know how to create a plan, track the results and tweak it when necessary to reach my goal.  I've done it with less important things in my life, so surely I can manage my weight and health in the same way.)

I will continue to seek solutions to my balance and hearing impairments and ways to adapt to a lack of solutions.

I feel so blessed to not only have so many dear friends but that, among them, I have those who are not only supportive but join me in my efforts.  They are so good for me...body and soul.  🙏😘

This is a recent photo of a high school friend on the left and me on the right taken just a couple days ago when she was passing through on vacation.  Consider this a "before" and watch for the "mid" in January and the "after" before my birthday in May 2014.

In 5 years, I will be the most fit, vital, active 75-year-old you have ever known.

WORKING THROUGH THE "PITY-POOR-ME'S"

I watched DVD's from two different implant companies and cried.  The testimonials showed people idealistically surrounded by family and friends and enjoying life.  In my more realistic frame of mind I questioned "I am not surrounded by family and friends, so why bother?"  (A case of the "Pity-poor-me's.")

I didn't qualify for cochlear implants again anyway.  This time, the phrases were so obscure that I couldn't guess.  The audiologist 6 months ago suggested I had done that too well.  With my left hearing aid only, I tested at around 27% sentence recognition.  With my right hearing aid only, I tested over 40%.  With both, on which the FDA bases qualification, I was at just over 40%...borderline.  I am to be re-tested in another 6 months.  Meanwhile, my name is on a list for a new study of those of us on the fence.  If I qualify for that, I will be notified.  Very frustrating.  I want something that will fix both hearing and balance impairment which doesn't yet exist.  (Notice that I said "yet."  That's positive, right?)

I've been feeling very negative lately about the usefulness of implants in my case because I believe my balance impairment to be more debilitating than my hearing impairment.  I question whether, at the age of 70, I want to have something implanted in my head.  At my age, most have had natural gradual hearing loss and many do nothing about it.  Because I was an active, vital, independent 66-year-old and my loss was sudden, I am extremely aware and am wearing two hearing aids that, according to the FDA, are "good enough."

With cochlear implants, I would be better able to hear in noisy environments and enjoy music again, but unless my family and friends begin to include me to do those things*, to even pay attention to me (I feel very alone in this struggle.), I still will not be able to be out after dark, to navigate the unrailed stairs of a stadium, to walk to my seat in a theater, to walk down an airline jet-bridge alone, to do more than one "major" thing a day.

Don't give up on me here.  I promised myself that my blog would not be just a list of complaints and "pity poor me's,"  though those things are necessary to your understanding.  

I have been educating myself, mainly through the VEDA (Vestibular Disorder Association) Facebook page and website.  A recent article discusses feeling "stuck" and being in the "comparison trap."  I have been there and know that it takes an enormous amount of emotional energy to move on; to stop listing those things that you can no longer do and those things that you will never do again and comparing what you can do today with the past.  http://vestibular.org/news/10-02-2013/chronic-resilience-comparison-trap.  In the article, author Joan Friedlander recognizes the mourning period and suggests that, in time, one must recognize that the past wasn't all that rosy; that it had it's problems, too, and states that one must find the "hero in the story," (self-confidence) and make a plan to move forward.

Through VEDA, I also learned of a study completed by a research team at Johns Hopkins.  Through their research, they have identified the tiny part of the brain responsible for balance and have used some  safe method to throw their healthy test subjects temporarily off balance.  The premise is that the reverse may be true and they may be able to use their findings to cure those of us with balance disabilities.
http://hub.jhu.edu/2013/10/08/dizziness-brain
This is exciting news for me and I plan to write a letter to the leader of that team and offer myself as a "guinea pig" in the research of that premise.

*I am extremely grateful to those precious few who do.

ATTITUDE IS EVERYTHING

Every day is a new adventure; a new opportunity for experience in whatever comes your way.  With the right attitude you can make fun out of anything.  Right.

I needed a major attitude adjustment after my monthly senior-discount day grocery shopping expedition which is always a challenge but, because of the discount and the chance to exert my independence,  I take pride in the accomplishment.  The squeaking carts, music, conversations, conveyor belts, loud-speaker announcements are annoying to some but can be debilitating for a hearing-impaired person.  The aisle upon aisle of shelves and back-forth up-down movement is dizzying and nauseating for a balance impaired person.  The grocery cart gives me some stability.

My usual store has been doing some remodeling and seasonal shifting of goods so things were not in their normal places.  There was a conveyor belt at one of the check stands that squeaked rhythmically loud enough to be heard throughout the store.  It was not so much the squeak itself but the rhythm of the squeak that threw off my balance even more.

Finally, I was done and got in the shortest check-out line.  There was some confusion and delay with the customer ahead of me, but I was unable to hear the cause. With the contents of my cart emptied onto the conveyer, I was told we would have to move to another line because there was a problem with the cash register.  The clerk assisted in reloading the cart and emptying it again.  I carry my own fabric bags including a thermal bag for frozen and/or dairy and conscientiously load the conveyor belt to make it easy to determine what goes in which bag; all frozen together, all dairy together, all canned/boxed together, etc.  She was not so conscientious and frozen ended up in every bag except the thermal one which made sorting through to put away the perishables urgent and much more difficult and time-consuming.


I got my attitude adjustment in the form of back and forth texts and a follow-up phone call from an old high school friend.  He can always make me grin and sometimes blush, even across the miles.  If my family and friends knew how therapeutic their voices are to me, I am sure they would want to wield that power more often.

EXCITED, EXHAUSTED, "LAZY" AND LONELY

I didn't sleep well last night and I don't know why.  Yesterday was a lovely day.

I drove to a restaurant to meet with a dear friend who I had not seen since high school.

The driving route was familiar to me, so no particular stress there.  The restaurant was chosen partly for its quieter patio seating and menu.  The meeting was pleasant and comfortable, so no stress there.  I enjoyed my visit with her and her husband so much that my smile muscles hurt.  I didn't notice until on the drive back home that I was tense across my shoulders, the back of my neck and my face. From past experience, I recognize this as a result of leaning in and straining to hear in a noisy environment or when more than one conversation is going on around me.

I immediately relaxed my shoulders and neck and face muscles and, when I arrived home, I did nothing but relax with a book, my computer and the TV with my favorite sports teams for the rest of the day.  I have learned that the concentration needed to move about without staggering or falling and to hear is so exhausting that one major thing a day is all I can handle.  A simple lunch outing is a major thing when you have a vestibular disorder.

Knowing that I was to meet a friend for our fitness walk early the next morning...another major thing... I contentedly made my way to bed about 9:30-10pm and tossed until after midnight.  I got up and had a cup of chamomile tea while I read a novel.  I texted my friend in the middle of the night that, because I could not walk on just a few hours sleep, I would not be able to meet her.  I went back to bed and found myself still awake an hour later.  I finally fell asleep only to be awakened by a phone call from my friend who had not yet seen my text.  By the time I put a hearing aid in she had left me a message that she was concerned because I was not at the park.  I listened and called her back but I, too, had to leave a message.  I forgot about the hearing aid, laid back down on the opposite ear and the phone rang again.  I groggily answered, explained, laid down again and, just as I was dozing off, rolled over onto the ear with the aid.  It woke me with a squeal.  I gave up and, though I tried to nap,  have been up and zombie-like for the rest of the day.

I have hobbies, housework, things to do, but don't feel like doing a thing.  This is explained by a psychologist who deals with vestibular patients who think themselves to be lazy and have the fear that others think the same of them:  https://vestibular.org/sites/default/files/page_files/It%27s%20All%20in%20your%20Head_Addressing%20Stressors%20%26%20Self%20Doubt.pdf

Of course, it is easier to just be still and alone with quiet around you, but it can also be very lonely.  Blogging about it is helpful.  Thanks for listening.  💕

I'M IN LOVE!

I "liked" the VEDA (Vestibular Disorder Association) page on Facebook and have been "sharing" their posts for Balance Disorder Awareness.  I am disheartened at the relatively few responses and shares that I've gotten from 189 friends including family.  I am extremely grateful for the caring souls who did respond and share and for those who have read my blog.

One friend who read my blog responded by email with the suggestion that I might qualify for a service dog.  I am aware that such hearing/balance service animals are available but dismissed the idea due to the presumed expense and the lack of space in my two-story, two-bedroom town home.

I fell in love with a very loving and well-trained golden retriever when visiting with family on a Pennsylvania farm.   I giggled every time he nudged his big head under my arm to have his ears scratched.  The big lug even stretched himself across my lap when I was on his level sitting on the edge of the porch.  Each time I left the porch to stagger across the field, he rose with me and accompanied me as though he knew I might fall.  

WHEN I get my windfall and can afford a second home there, I will find myself a companion just like "Blue," aka "Cletus."  (Pictured here with my grandson.)

I AM LEARNING

I've heard it said that you are only old when you stop learning.

Most everyone's retirement dreams are to relax and have fun with friends and family and I'm just stuck here by myself.  Yes, I know I  am blessed with many dear friends, but I want to be able to come and go as I please; to be able to say on a whim that I think I'll do this or that or go here or there without having to consult someone else.

If you read the links in my second post, you learned that a part of my vestibular disorder is lack of balance in the dark.  According to my vestibular therapist, that cannot be remedied.  While on a visit with my son and his family, we all piled out of his vehicle in front of his house.  The headlights remained on for a moment, but when they went off, with no porch light to illuminate the way from the driveway to the door, I froze in place.  I felt like I was going to fall off a cliff.  Someone grabbed my arm and another ran inside to turn on the light.  That has happened a couple times so I never venture out after dusk and before dawn without someone to hold onto.

Another aspect of night-time imbalance happens when laying back in bed at night after all the lights have been turned off.  The glow of a night-light is not enough to prevent the feeling of falling back into a hole.  I have a bedside lamp, but just leaning up and back a bit to switch it off has the same result.  A dear friend gave me a remote switch which is on a cord that the lamp cord plugs into.  I drape it over the lamp during the day where it can be turned on upon entering the room and keep it under a pillow next to me at night where it can be turned off once I'm all settled in.   Problem solved...at least when I'm at home.  Someone suggested a "Clapper" which would work as well.

The more that I learn about the disorder, the more questions I have.  For instance, having refused at my doctor's recommendation, the evasive test to hopefully confirm the cause, I now wonder if there is still a neurotoma somewhere that hasn't been detected that may cause more damage.  I must pose that question to my neurotologist when I next meet with him.  Because mine is such a unique case, he cannot tell me with any assurance whether or not cochlear implants to improve word recognition will also improve my balance.   Because the implant actually bypasses the hearing/vestibular system, it is doubtful.

FULL RETIREMENT

Today was my last day at the spa/health resort.  The full-timer for whom I spent Saturdays doing clerical work and some sales has decided to go part-time.  With her full-time replacement, there are no hours available for me.  In considering her changes and how it might work, I told her that it would just be the push that I need to finally fully retire; that, without the re-shuffle, I would probably just hang on until I collapsed.  I am not financially nor psychologically ready, but I definitely am physically ready for full retirement.

I have been in the formal work force for over 54 years.  My first real job was part-time sales at J. C. Penney at the age of 16, though I had a regular baby-sitting job prior to that.  In high school, I was a student secretary for a coach who was a retired military officer and, upon graduation, became a stenographer for the U.S. Information Agency in Washington, D. C. when the renowned newsman Edward R. Murrow was Director.  In addition to my week-day responsibilities in the USIA Offices of the Near East and South Asia, I was part of a week-end steno pool that worked for Mr. Murrow.

After the birth of my first son, my little family moved to my hometown where I worked as a stenographer for a nuclear engineer in a plutonium laboratory.

After the birth of my second son, when my husband found employment in another city, we moved and I worked for a while in the office of an early computer supply company; an IBM rival...then part-time sales, again, for a major retailer.

After another move, I continued my employment with the same retailer advancing from part-time sales, to merchant's secretary, to buying-office co-supervisor, to assistant sales manager, to sales manager with continually increasing staff/inventory/merchandising/training/payroll responsibilities.  When the company reorganized, there was a buy-out that seemed tailored to me as I just met the requirements for age and service.  I took the buy-out and did a wide range of temp work until I began to work for a major airline in a local call center.

I progressed from entry-level domestic reservation calls to domestic problem resolution.  Ten years later, when that company reorganized and put my department back to entry level, I stuck it out for another year and, rather than train for international reservation calls, I retired with a small pension and full travel benefits for life.

Having already retired early twice, I began a search for the perfect part-time retirement job.  An old retail management friend, who was director of a chain of retail thrift stores, just happened to be looking for someone to establish a training department to give their clients/employees some skills that they could take with them beyond the non-profit stores.  They established an entire training facility for me and soon after I graduated several classes, once again, both he and I were reorganized out of our jobs.  I was offered something different but not at all the perfect part-time retirement job, so I was looking once again.

I was offered two jobs on the same day; one as a weekend manager for a tourist attraction gift shop and the other as concierge at a renowned health spa/resort.

And this post has come full circle...

"While others may argue about whether the world ends with a bang or a whimper, I just want to make sure mine doesn't end with a whine."... Barbara Gordon

COPING?

Coping?  I thought I was doing well and I try to not ponder the negatives, but this week has been rough.

One learns one's limitations and either adapts, asks for assistance, or just does without.  It is also vital to be able to laugh at oneself.

I learned very quickly that, when something is dropped on the floor, much thought and preparation must be taken in order to pick it up without falling over.  Without balance, just unbuttoning your trousers while bending slightly to lift the toilet seat can result in diving head-first into the porcelain bowl.  (Well...it nearly happened.)

Natural movements are not "natural" for one with a vestibular disorder.  If someone calls your attention to something, you naturally turn to look.  I must LOOK to TURN.

A blow came this week in the form of a kind offer from my "much, much older" sister.  Upon learning that, on top of the vestibular and hearing problem, I am currently suffering from allergy-induced asthma and deteriorating knees, recently had a melanoma removed from my back and a cyst found in my breast, she has offered to come to Arizona to take care of ME;  my sister, who is 17 years older and still writing a weekly human-interest column for her local Florida newspaper, and who, a couple years ago said that she would probably never be able to travel again due to age-related health issues.

As the annoying baby sister, I love to send her mean birthday cards...usually a week's worth.  I look for the funniest all year round.  One of the funniest I remember had the statement on the front "For your birthday, I have arranged for the delivery of a bouquet of balloons; one for each year."  On the inside was a floating delivery guy with a huge bouquet.  The message read "He was last seen somewhere over Cleveland."

The cyst, by the way, was found to be nothing but a small fibrous mass.  The knees are just a discomfort most of the time at this point and I am avoiding surgery so far with 5 weekly gel shots administered every 6 months directly under the knee cap.

The asthma is controlled with a once-daily inhaler, but allergies over the past couple weeks turned into a painful and exhausting sinus infection and curtailed my fitness walks which were already temporarily  limited by a round of gel shots in my knee.

While it would be wonderful to have someone to do those things for me that are most difficult or impossible...grocery shopping and lugging them into the house, toting my recycle bin to the dumpster, running errands or going out to dinner after dark, carrying things up and down the stairs, and numerous chores that have gone by the wayside...I don't need or want a nursemaid.  In fact, in many ways the presence of another in my daily environ makes it more difficult for me.

Part of my adaptation involves the placement of my furniture and belongings to avoid trip hazards and for ease of moving about my home.  Lights must be turned on/off in a specific order so that I always have a light source.  Alone, I am not constantly required to hear and understand what another has said.
I have already regrettably advised my son that his family of five can no longer stay with me when they visit because of these things.  I love having my home full of family and it breaks my heart that I can no longer unless I have a windfall that would allow me to expand.  That being said, a guest or two is still more than welcome, but they MUST understand my difficulties and take care to keep them in mind.

By carrying my own night lights and a sonic-shaker travel alarm clock, I manage to adapt to hotel rooms or overnight visits with family or friends enough to comfortably spend a few days at a time away from home.  I've learned that I cannot be rushed and, therefore, must always be organized and allow plenty of time to be ready for anything.  Again, my hosts must understand and plan accordingly.

The negative thoughts have been creeping in and finally manifested themselves in the realization that I will never fulfill my retirement dreams though just three years ago they were nearing reality.  Now that I have the time, because I have been unable to maintain my employment, I can't afford to travel, go to concerts and plays and, even if I could afford it, I am physically unable.  I don't know if those who grow old gradually suffer the same grief, but I am suddenly done.  I can no longer do those things that I love and dreamed of continuing on a grander scale in retirement.

Full retirement has come...

"The secret of health for both mind and body is not to mourn for the past, nor to worry about the future, but to live the present moment wisely and earnestly."... Buddha

GOOD NEWS - BAD NEWS

Good news...latest audiogram in March 2013 indicated very little further changes to my hearing levels.
Bad news...Neurotologist took me by the hand and looked directly at me knowing that is the only way that I could understand him well even with my two hearing aids and said "Judy, what I see is a rapid degradation in word recognition."  He went on to explain that it wasn't age related (a small comfort) because it had not progressed gradually over many years but had instead degraded rapidly over just a few months.  He said that it could be genetic, but cause at this point is unimportant; we need to, now, address the problem.  I, of course, responded "Oh my God!  Am I going deaf?"  He didn't really answer that but told me that there are things that can be done.

He gave me a physiology lesson about the function of the cochlea which is the part of the inner ear that translates what is heard for the brain.  The many tiny sensors/hairs on the cochlea were disappearing rapidly.  He recommended cochlear implants to replace my natural cochlea.  They would be implanted one at a time; the worst ear first.  That would be my right ear which, just 1.5 years ago, had no loss at all and, just a few months ago, no cochlear loss.  The time between implants would be dependent upon how quickly I adjust.  The adjustment period could be 3 months to years dependent on age, length of time one has had hearing loss, general health, intelligence, and attitude.   He sent me back to audiology for a Cochlear Implant Evaluation.

The FDA has specific guidelines that must be followed in determining C.I. qualification.  The test involves the use of optimally adjusted hearing aids that fall within a required range.  If the audiologist can't properly adjust the personal aids, he/she uses more powerful in-house aids.  The patient is asked to repeat individual words, then complete sentences, presented by a recorded voice.  The sentences used in my evaluation were such common phrases that, even if not heard well, could be easily guessed.  The FDA bases one's qualification on sentence recognition rather than word recognition and I did not qualify because, as the audiologist said, even though I would have qualified if it were based on individual word recognition, I am a good guesser so the results of the sentence recognition test were borderline.  I am to have a 2nd C.I.E. in October.

How Hearing with a Cochlear Implant System Works

A cochlear implant system consists of two main components. The external component, which is worn on the outer ear or discreetly on the body, and the internal component, the implant, which delivers sound to the hearing nerve.

Cochlear implants bypass the damaged part of the ear:

1. Sound is captured by a microphone on the sound processor.
2. The sound processor converts the captured sound into detailed digital information.
3. The magnetic headpiece transmits the digital signals to the internal implant under the skin.
4. The implant turns the received digital information into electrical information that travels down the electrode array to the auditory nerve.
5. The auditory nerve sends impulses to the brain, where they are interpreted as sound.

IT HAPPENED AGAIN

It happened again.  I had been told to restrict sodium to less than 2000 mg. a day, to avoid stress and get plenty of rest.  The first...sodium restriction...was the easiest; avoiding stress, the hardest.  I had a dear friend who I love despite her volatile temper and self-assurance that no other opinions matter.  That temper was directed at me in a series of unfortunate misunderstandings.  The incident stressed and exhausted me and I awoke the next morning with another episode, much milder than the first, but leaving me unbalanced once again.  While I have forgiven her, the venomous words cannot be forgotten so the friendship has ended just when I needed her most.

Several weeks later, I had my second serious episode.  It occurred much the same as the first had nearly three years earlier and, this time, left me with right-side hearing and balance loss.  I went through the treatment for a possible viral infection once again, was fitted for a second hearing aid and referred to a neurologist who specializes in hearing and balance...a neurotologist.  I was put through another series of tests including an MRA and carotid artery ultrasound.  No tumors or lesions were found.  An invasive test was offered but not recommended as, while it might help determine cause, it would do nothing in regard to bringing us closer to a remedy and had the slight possibility of causing stroke.  The conclusion was that "something" had wiped out the neuro path from my feet and my eyes to the balance center in my brain.  Without my hearing, I lack the three things that the good Lord gave us to keep us upright on this spinning orb.  I went through balance therapy once again and practice often to remind my brain of the new path that my eyes have found.

Management at the health resort where I worked as a concierge kindly insisted all through this ordeal that, though I was no longer able to conduct walking tours, I was valuable to them in so many ways that I only needed to let them know what I needed from them to do my job.  Finally, one evening while working at the desk in the hard-surface busy lobby, I became frustrated and humiliated when I had to ask a guest to repeat himself several times and still didn't understand him.  A co-worker took over.  I went into a back office and cried, came out and said to my supervisor "What I need is to not work here any longer; at least until...if ever...I get this "thing" resolved.  I am on long-term disability from the concierge function but continue to work a quiet back-office clerical job one day each week.  Even that exhausts me due to the strain of concentrating to hear and maintain balance.  Back and forth from paper to computer screen is dizzying.

I continue to fitness walk about four miles three times a week with a friend.  When out and about alone, I use a cane when I know that I will be on rugged terrain or need to navigate curbs or stairs or embankments without hand rails.  The cane makes the statement "either give me a hand or get outta my way."

I have sold my bike and my SCUBA gear and given up travel alone.  I no longer enjoy luncheons or dinners in noisy restaurants or homes.  I still do my own grocery shopping, though I find it one of the most difficult things to do.  Because I can't navigate due to "oscillopsia" that goes along with bilateral balance disorder, I still drive but only in areas that I know and only in daylight hours so I am housebound from dusk to dawn.  Friends have suggested a GPS.  I would neither be able to view it while moving nor hear it clearly.

Mine is an invisible and misunderstood malady.  Hopefully, the following links will help with that understanding:

http://american-hearing.org/disorders/bilateral-vestibulopathy/

https://vestibular.org/sites/default/files/page_files/It%27s%20All%20in%20your%20Head_Addressing%20Stressors%20%26%20Self%20Doubt.pdf

It gets worse...

“Anything you may hold firmly in your imagination can be yours.”…philosopher William James

HOW IT ALL BEGAN

I began this blog, not only to educate friends and family about my condition, but to share my experiences with others who may be in the same situation; to give them the comfort of knowing that they are not alone.  I have been too shy to share it with the world and have not actually published it.  However, I think it is time.  The blogs that I have read on the VEDA website seem so professional that I am intimidated fearing that mine will seem extremely amateurish in comparison, but I'm about to take the plunge.  For those reading it for the first time, while I encourage you to respond with your experiences and advice, I hope that you will read from the beginning and not respond until you've caught up with me on this adventure of discovery.  I am learning as I go.  

Where to start?  At the beginning.

Having been "newly re-singled" and independent, I had just reached my full social security age and was in terrific physical shape, traveling, scuba diving, bicycling, strength training...  I was working my dream retirement job; part-time at a health resort/spa.  Rather than "I have to go to work today," for the first time in my life I was saying "I GET to go to work today.

I awoke in the middle of the night with a horrific nose bleed.  I finally got it stopped, went back to sleep and woke up with the world spinning.  For what seemed like hours, any movement caused nausea.  I stumbled to the bathroom, threw up, made my way back to bed and just laid flat until it passed.  Once the world stopped spinning, I still had no footing.  I felt as though I was aboard a ship in the midst of a hurricane.

I made an appointment with my primary care and, in his absence, met with a physician's assistant who referred me to an ENT specialist.   A few days later, I was put through tests for Meniere's Disease and the typical ENG/VNG tests.  I was diagnosed with left-side balance loss with no apparent cause or known duration.  Though days had already gone by, he put me through a regime of anti-virals and steroids in case it had been a viral infection.  If it was, the damage was already done. I had an MRI and saw a neurologist who found nothing that would explain what happened.  I saw a vestibular therapist for several sessions, did daily balance exercises and seemed well, though I still had problems with sudden movements.  My job required that I conduct orientation tours of our beautiful property for first time guests which I was no longer able to perform.  I joked that I truly was a "dizzy blonde."  With therapy, I was eventually able to conduct tours again, even walking backwards while I talked to the guests.

Just as suddenly, about 3 months later, I suffered a sudden hearing loss.  I answered the phone at work and saw the caller-id display.  It was my boss but he sounded like Donald Duck; like someone on helium.  For some reason, I had the presence of mind to switch the phone to my right ear and he sounded normal.  When I hung up the phone, I turned to my co-worker and said "I just lost hearing in my left ear!"

Back to my ENT, who began a series of steroid shots directly into my left ear which resulted in no improvement.  Because Meniere's Disease is episodic and I had, so far, only one episode that didn't behave like Meniere's, he was still puzzled.  I was fitted for a digital hearing aid which required constant adjustments because my hearing kept fluctuating.

Sometime during this time frame, I had a bad fall.  Knowing that I couldn't make any sudden turns or move quickly to get out of someone's way without losing balance, I went with friends to a local ski resort during the off-season to ride the lift for the view from the top.  At the top, I asked the lift operator to stop the lift so that I could get off.  I forgot to do that on the scenic ride down, hopped off the lift, and it pushed me off into the safety net.  I suffered a very bruised glutious maximus and a very bruised ego.
The ego healed, the butt got worse before it got better.

Three years went by and I was doing well with a left-side hearing aid, fitness walking with friends, and back to fully executing the responsibilities of my job.

Stay tuned...