The Struggle is Part of the Story

You haven't heard from me for a while because I've been busy.  If you are a Facebook friend, you know that my cochlear device was implanted on November 4.  It will be activated on November 19.  The surgery went well but I was kept overnight in the hospital for nausea control.  My son came from out of town to care for me for the week.  I have arranged for friends and a handi-cap van service to take me to my many follow-up appointments and other long-distance appointments for I have decided that it is unwise for me to drive very far or in heavy traffic due to the enormous concentration required with hearing loss and the spacial disorientation that comes with bilateral vestibulopathy. 

As I mentioned in my last post, my hope is that the cochlear implant device will help to alleviate fear and confusion is crowds.  A good example of confusion caused by my hearing impairment occurred at my Silver Sneakers Class.  The class was paused near the end and the instructor handed her microphone to a participant.  I heard and understood the words "Mary" and "died" and thought that it was an announcement about another participant's death, but why were they laughing?   Beyond the noisy environment after class, my friend told me that it was a joke:  "An elderly gentleman told his wife that, when he dies, she is to get rid of everything he owns; that when she remarries he doesn't want some A--hole using anything that was his.  Her response was '.What makes you think I'm going to marry another A--hole when you die.' "  Not much of a joke third-hand, but my confusion gave us a good laugh.

My device is actually two complete kits; one for every day and one for activities such as aqua-aerobics which I had given up because I could not hear the instructor without my hearing aids and could not wear my aids in the water.  This new device is submersible!  YAY!  I am excited to finally get it activated.  I'll post again soon to let you know how happy I am with it.

I'm too hard on myself.  I'm tired being tired.  I still expect to be able to do everything and, when I can't, I am disappointed and despondent.  On the other hand, when I DO accomplish something on my own, it is cause to rejoice.  Yes, the struggle IS part of the story and it will have a happy ending.

Decisions, Decisions, Decisions!!!

In case you missed my Facebook post, here is Dr. Bilgrei's very understanding and informative article about the cognitive and psychological aspects of vestibular disorders:

http://vestibular.org/sites/default/files/page_files/Documents/Cognitive%20Aspects%20of%20Vestibular%20Disorders.pdf

She confirms many of the issues that I have discerned on my own and mentioned in previous blog posts.  I have also developed her coping strategies. (Except "listening instead of reading" due to the double whammy...my hearing impairment.)

In a previous post, I told you that, after three tests, I finally qualified by Medicare/FDA standards for cochlear implants but chose to not go through with it because, for the first time, I was told by the audiologist that the procedure could cause worsening balance.  I've changed my mind.  At a recent appointment with my Neurotologist/Implant Surgeon, he pointed out that balance function is seldom even checked in implant recipients because it isn't usually an issue and that I have so little vestibular function that any further loss would hardly be noticeable, if at all.

I have asked the question "how many holes can one have in one's head?" in regard to a new study of vestibular implants.  In other words, can I have an implant to improve my balance as well as an implant to improve my hearing?  My Neurotologist said that he doesn't know; that no one is yet walking around with those things; that they are in the beginning stages of the study as cochlear implants were decades ago.  He pointed out that of my two problems nothing can currently be done for my lack of balance, but that implanting a cochlear device to improve my hearing CAN be done, NOW.  Because Medicare will cover it since I understand less than 30% of what I hear in each ear, he called it "a $50,000 gift from society."

I have pondered the pros and cons and asked opinions of close family and friends.  We agree with the doctor that the cons seem to be minimal. A hearing aid in the right ear does little to improve my hearing and aids do not compensate for cochlear loss.   On the pro side, while a cochlear implant will not restore my independence, it will make my dependence a lot less confusing and frightening.

A couple recent examples of fright and confusion due to my hearing impairment:

At the airport, after checking our bags and heading for the gate, we were turned around at security by an agent and sent elsewhere.  We were running late (due to my cognitive and disorganization problem and inability to rush) which made me anxious and, because no one spoke directly to me, I had no clue what was happening which made me even more anxious.

On the return trip, at our connecting point, weather disrupted service and the airport was filled with thousands of stranded passengers including us.  Being jostled around in crowds is a nightmare for one with a balance disorder and even more frightening and confusing when you can't hear.  I was momentarily left alone in the departure lounge when, after an announcement that I couldn't understand, people began to move about.  I asked the woman next to me what the announcement had been as she was rushing out of the area and I could not understand her response.  I checked my smartphone app and learned that there had been a gate change, but I couldn't leave the area without the rest of my party.  When they returned, we rushed to the new gate, weren't boarded and had to return to the gate we had just left to wait for the next flight.

We weren't boarded on the next flight and had to overnight at an airport hotel.  With so many stranded, my son was lucky to find a single room for us with two beds.  Once at the hotel desk, I whipped out my credit card to pay for our room.  Meanwhile, my son was right next to me in conversation with another front desk employee.  I thought he was just signing us up for the morning shuttle and was thoroughly confused when they handed him back his credit card and a room key.  Again, because they weren't speaking directly to me, I had no idea that a 2nd room had been found.

Friends have kindly told me that they want to help but that I must tell them what I need.  I have been negligent in that and have since spoken to my son and grandson and told them that, in situations like that at the airport, I need one of them to stay with me and, in situations like that at the security check point and at the hotel, I need to be spoken to face-to-face, "Mom, this is what is happening..."

Despite the problems, I love my one-on-one time with my son and grandson.  My son has always been able to make me laugh, sometimes at the most inappropriate times and places, and my grandson is very sweet and attentive.

We ended up renting a car and my son drove the remainder of our trip to get us home that evening.  I was able to just lounge in the back seat while he did all the work.

I've notified my Neurotologist's office of my decision and am awaiting word from his assistant as to when my implant surgery will be scheduled.  He is booking about 2 months out, so it will most likely be mid-October.

Now, I must decide which of the 3 major implant brands have the best functions for me. The technology is quite amazing.  Stay tuned...

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.