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...