29 January 2012

A Letter to Congress

Dear Congress,

I want you to know how out of touch you are with the middle class.  The news reports it, people yell it from the streets (literally), but somehow you all, every single one of you, have missed it.  So I feel I must tell you just how out of touch you really are.
 I was part of what you might call the middle-class.  I made good money working as a firefighter full-time at one department, and part-time at another.  My new husband made so-so money working at a local supply house for electricians.  His company doesn't, and hasn't in a long time, offered any benefits, so we had good (not great) health insurance through my work.  We were paying off bills, beginning to save for a house (we rent now) and spending money on things we needed to establish our household.  We also were talking about when we were going to start a family, and I was going back to school to get my Masters in Special Education so that once we did start a family I could find a job where I would be home at night.  We took out a student loan, and were not worried about making payments, because we made enough money to do what we needed to do.
Then I got sick. I was diagnosed with Meniere's Disease (a hearing and balance disorder), and before my FMLA time was even up, I was without full-time employment. Because of the severity of my disorder, I was no longer able to preform the duties of being a firefighter, so I was let go.  I had been with the company seven years, and as soon as my paperwork was done, I was let go.  We had a long-term disability policy through my job, but it would not even begin to pay for 90 days, assuming I was approved. We had to give up our health insurance because to COBRA would have cost more than $800.00 a month, and that was 3/4 of my husband's take home pay. Because we had to give up our insurance, I also had to quit physical therapy for my balance.  I had a part-time job for a little while, but because I was no longer able to be a firefighter there, well, they hired someone to fight fire, and someone else to replace me in the office. I was let go.  I found some other work that I could do for the following year, but it was difficult with the constant vertigo attacks and the daily symptoms of Meniere's.  That job had no benefits. 
I did finish my Master's program.  Since you passed the "Obama Care" laws with the student loan reform tacked on, I lost my chance to find a job in my state in a "critical needs" area and have my loan payed back.  My loans went from a great state program with lots of options, to a federal program that had fewer.  I no longer qualified for that program for repayment.  I thought perhaps I would find a job pretty quickly with my degree, but it was not to be so.
I work as a substitute teacher on call for a school district more than 25 miles away.  The district in my county hasn't accepted new substitutes in several years, and I was lucky enough to get on the closed roster in the next county.  I still struggle with the Meniere's, and there are many days I am too sick to work. I applied with Social Security Disability and was turned down.  I assume because my hearing loss is getting worse eventually I will be able to apply and be accepted again.  But frankly I want to work, so I plan on doing so for as long as I possibly can, even if I really shouldn't.
Now we are 18 months or so from my last days with health insurance.  I'm working a day or two a month, and we receive a small check from the disability insurance policy I was so wise to take out on myself so many years ago.  That policy will end in September, if not before.  My husband is working full-time, and although he has looked around for a better job with benefits, there are none.  My job search has been about the same.  I am physically limited due to my lack of balance and hearing issues, so I can not work "just any job".  I apply for jobs that are in my field and for jobs that are not.  I spend three days a week filling out applications for companies that have no openings.  I spend three days a week looking for a job that I can do, and that has benefits.  The other two days I spend working on keeping my skills and knowledge up to par.  Sometimes I get called to sub.  Those are great days because I get to work and earn a little money. But we still don't have insurance. 
I noticed a few weeks ago I wasn't feeling so well.  After a few doctors visits, and an expensive scan, we have discovered nodules and a lump on my thyroid. We are scrambling to get the PCIP the federal government offers so that I can see a specialist.  My family doctor told me there were a number of other doctors that won't take a new patient without insurance. So we are in the process of finding the money to afford both the coverage and the deductible.  We can not afford insurance for both of us, so I will be the one that gets the coverage.  Just like we can not afford dental care for both of us, so my husband gets the care, and I don't.  There are lots of plans and resources for those that are low income, but the levels for "low income" on paper are a joke.  We don't qualify for any assistance, yet we still can not afford medical care.  How is this possible?
This is just my story, there are thousands more like it. You have no idea how tight money is until you are looking at gas having gone up another 5 cents over night and you are trying to decide if its worth it to drive 25 miles for a job that pays $65.00 a day.  You have never checked your bank account and realized its three days until payday and you don't have enough money for groceries and will have to eat what ever canned soup you have in the cabinet until the pay check gets cashed.  You have never had the phone call from the doctor telling you they found a lump on some part of your body and burst into tears because you don't have insurance and you can not afford the tests that need to be run to see if its cancer. You have never had to eat rice and beans for two weeks so you can afford new clothes for an interview. You have never had to count change from your piggy bank to buy a pair of pants at the Goodwill because you last good pair split.  You have never had to decide not to see a doctor when you had the flu because you can not afford the visit, and there is NO way you are going to the ER until you are at deaths door because its too expensive.
We are not always that tight. We saved up for hockey tickets, and we took a weekend trip last year to the mountains. Sometimes, when medical expenses that we are not expecting occur, we are back to rice and beans for a few weeks. It's going to be really tight for us from here on out. I'm working on finding the specialist to see about my thyroid, and hoping I get approved for the PCIP.  The lump is uncomfortable and I don't imagine its going to go away on its own.
You, ladies and gentlemen, have no idea what its like in the real world.  I live in the real world.  I know that the "unemployment" numbers are a joke. I know the jobs out there have no benefits and lower pay than five years ago, and I know that if I get sick I'm in deep trouble. 
Do I think you could do a better job? Yes.  Do I think you need to stop fighting and listen to people like me?  Yes.  Do I think you will ever do it?  Nope. After all, why should you care?  You have a good paying job, great health care and a benefits package that follows you home even after one term.
I don't know, nor pretend to know, how to "fix" the countries health care issues. I don't know how to keep jobs here and make more jobs. I have a few ideas about gas prices and education though. 
You all are set for life with one term. One. I have to find a job that has benefits and pays enough to allow me to have a paycheck at the end of the month too. Oh and that job has to last a while.
Maybe if you were in my shoes you'd understand and actually want to do something. Maybe you'd "get it", finally. 
Stop representing yourselves and start representing the people, like me, that voted you into office. Thanks for nothing Congress.

Signed: A scared voter......

24 January 2012

Looking for Redemption. (I didnt even know he was gone until you said something....)

In the last week I have applied to dozens of school districts, christian schools,  and county governments. I have spent hours pouring over job posting pages that say "no vacancy".  Then I stumbled upon what would have been my dream job just a little over a year ago. Teaching fire and police work to high school kids at a local vocational school.  I stared down at the job posting after it zipped off the printer.
I am more than qualified to teach this, I think with the paper in my hands.  I applied for the same job at a different school a few years ago and lost out to a guy who was more qualified than I.  Still, I am way more qualified than most of the people that will apply for this slot.
Something deep inside hopes I get this job because I need the money and I need the insurance. Something deep inside hopes I don't even get an interview. Why? Because I will be treading down a path I thought I had left behind me.  I will re-enter the world of the fire service, even if only as an instructor, and as I began to think about how cruel some of the men treated me, I feel the bile rise up in the back of my throat.  I think about how difficult it is going to be to teach something I loved so dearly, and that betrayed me in so many ways. 
But I need the job.  And I know I will be good at it. My mind finds all kinds of reasons NOT to put together a package for the school's director.  My mind tries to reason that because I can no longer physically fight fire, that I can not teach it. But that just isn't so. A deep part of me wants this job SO bad, because it had been a dream of mine to teach at this school doing this exact thing! I would be SO good at it. I would be better than anyone had ever had time to be, and then some.
How can I teach this with a straight face?  How can I stand in front of a group of kids and tell them that being a firefighter or a cop is the best thing out there when being a firefighter nearly broke my soul?  Part of my soul will always lurk where those big red trucks are. Part of me will always listen to the sirens in the distance and feel envy. Part of me will always hate myself for not standing up for myself when I was pushed, cursed and called slurs.  Part of me wants nothing more than to don that gear again and prove to myself and to the naysayers that I am still brave, still strong, and still one of them. 
Part of me wants the nightmares to go away, and wants to feel as if I am worth more than the piece of trash a few of the men treated me like. I was great at that job, and no matter how good, no matter how great I became at anything, I was always met with scorn and ridicule for the tiniest infraction.  Sure you can tie all of the rescue knots, but your hair is in your face.  Sure you just pulled your buddy from the hole in the floor of that burning house by yourself, but you didn't see that muddy hand print on the camera you never used. Sure you just fought a wildland fire for 16 hours and have been awake for 32, but you missed a spot cleaning the urinal.  Sure you have been in the station running errands for the chief during the drill, but its because you are a dumbass.  Sure you just worked the first major plane crash at this department in 15 years, but you left your school books on the counter when the alarm came in....  The list goes on and on and on....
I know the job inside and out, even after 18 months away from the station. Even after being out of the loop, I have not forgotten.  I have not forgotten anything.
I need the job. I need the pay, the benefits, and the feeling that I'm doing something worth while. 
So the packet, addressed to the school, sits in a dark post office bin some where between here and there. It contains a resume, a great cover letter, transcripts, and so on.  I look at the paper with the job posting now tossed carelessly aside on the desk.  Am I the one they will want?  Can I train kids to love two of the most dangerous jobs outside the military?
Can I forgive myself for betraying my own heart and stepping back into the fire service once again?
There is no redemption to find. There is no rescue from the mixed feelings I have about the job I applied for. There is no way I can recover the lost pieces of my soul that are somewhere deep within the smoke tinged halls of a fire station.  Just as I am beginning to heal, I look again in the general direction of the fire that scorched me, and think about another approach. 
Que sera, sera....  What will be, will be.......

UPDATE: only two days after mailing in my resume, I received the "you are not in the pool of people we actually want to speak to in person"letter.  So no worries, eh?

16 January 2012

TILT!! Life in a Pinball Machine

Of the Meniere's sufferers I know, I am unique.  Before my vestibular system was ravaged by Meniere's, I already had problems.  As a child, I was diagnosed with "Sensory Integration Disorder" and "Developmental Dyspraxia".  Both of these affect how the brain understands and reacts to where the body is in space.  For me, it is like living in a pinball machine.  I bounce off of objects and into objects all the time. It all has to do with my sensory systems being faulty. It only got worse with Meniere's.

For those that are not familiar with two of the systems for processing this, here is a quick rundown.
      The Vestibular system controls your balance and some of your spacial perceptions.  This system    is in the inner ear and is a system of fluid and tiny hairs that detect movement and send messages to the brain.
      The Proprioceptive system tells your body where you are in space, how much pressure to put on objects, how much pressure objects are putting on you, how to react to sounds, how to react to all of the senses put together. (its a little more complex than that, but that is a start for a basic understanding)

These systems are not as well known as our "five senses" but they play an important part in how our bodies react to the world around us.  Those with Meniere's have serious issues with the Vestibular system.  It plays havoc with balance and causes episodes of vertigo where your body thinks you are spinning, but really you are standing still.  This can go on for hours at a time. As a general rule, the proprioceptive system is not affected for those with Meniere's.  Most people take for granted that their bodies work out the complex figures required to get from point A to point B with out injury or accident.  Those with sensory issues (people on the Autism Spectrum are a good example), do not have this system in working order. Children have a tougher time than adults because their bodies and minds are still growing and it takes time for their brains to get used to how to react to the false information these systems send. Adults have a slight advantage because they have stopped growing and their bodies can "get used to" some of the data and make adjustments a little better.

I am one of those "lucky" few that have sensory issues.  Just as in those diagnosed with Autism, my body reacts "inappropriately" to stimuli around me.  What may cause great pain in some, I may not feel, where walking on uneven surfaces may be easy for most, its a challenge for me.  I startle easily, things "feel weird" to me, and I have odd habits that seem almost OCD to some, but it soothes the sensory issues.  This was ALL before Meniere's spun into my life.

Because I had 33 years of adjustments and getting to know my body, my sensory disorders didn't seem as bad once I reached adulthood.  I still ran into things and still was awkward and clumsy, but my body had figured out what signals to trust most of the time and what signals to reject.  My "pinball machine" life was not so bad.  I still have bruises from running into things, and am still clumsy.  Then my vestibular system was damaged by Meniere's.  Suddenly, my body did not have good signals to rely on.  I became as clumsy as I was as a child overnight, coupled with the fact that I had no balance to speak of.  I was no longer the size of a child, I am an adult.  In being an adult I run into things at adult speeds.  I get adult sized bruises and injuries. Though I have never been graceful, I am quite the "bull in the china shop" now.  I try so hard to be careful, but when your brain doesn't function quite right, there isn't much you can do. 

So my life is like being inside a pinball machine.  I bounce off of things, I run into walls, I fall a lot, and I knock things over.  That is a normal day.  Its worse now because of Meniere's and the vestibular issues, and it will take time for my brain to adjust to the new incorrect signals it gets.  In the meantime, I find bruises from things I don't remember running into, and I knock things over as I run into them. 

Too bad no one is keeping score, I'd be in the hall of fame by now.... just sayin'.

12 January 2012

Metamorphize Me Please....

In the early 1990's, a country song was able to use the word "metamorphize" in the lyrics. ("Bubba Hyde" by Diamond Rio)  I always liked the way they could get that word into the lyrics of a country song, no less.  "You ought to see him metamorphize, from Barney Jeckel into Bubba Hyde". 
The song is about short term change.  This regular guy becomes a honky-tonk wild man on the weekends.  Its a great song, you should check it out if for no other reason than to say you actually heard a song that used the word "metamorphize" correctly.... 

To "metamorphize" is to change. That old hateful CPT I worked for used to say that people fear two things, fear and change.  As much as I hate to say he was right, in this phrase he is. People fear change.  Change is different, and people crave things that are the same, things that are dependable and things that never waver.  People thrive on patterns of behavior.  Sometimes change is a good thing, other times it isn't.  Change can be with purpose, or it can be one of those things that happens even if you didn't choose it.

I didn't choose my metamorphosis.  It was chosen for me. For eleven years I lived and breathed the fire service. Some may have called it a "love of the uniform", but they would have been wrong.  Sure uniforms were cheaper as they were issued, but it was the "love of selfless service" that kept me where I was.  I had to be "one of the guys" to fit in.  And thought I never really fit in, I became something of an anomaly even beyond the fire service.  In the fire station, I proved so many preconceived notions wrong, that it made people change their ideas.  In the "real world" I kept up the persona that kept me alive, so to speak, in the fire station.  It was terribly rough around the edges.  It was tough with a splash of swagger.  It was the persona of an independent woman who tried to fool everyone, including herself, that she was tough and untouchable. 

Then my life changed, and so did I.  Suddenly I needed someone to help me with tasks I had once prided myself on.  I could no longer climb ladders, I needed a rail in the shower to keep from falling, I needed to hold onto someone to walk straight, I needed help.  I no longer could hide behind the idea that I was tough and untouchable.  I was clearly vulnerable, and as weak as the next guy.  Literally overnight, I became less independent.  It was, and sometimes still is, very hard for me. 

Some changes were good, I have to admit.  I get to sleep in my own bed every night.  I have begun to enjoy things that I can schedule a little in advance and not worry about being called into work.  We could get season hockey tickets and not stress about how many games I would have to miss.  We don't have to worry about me being away for holidays. 

Some changes were unexpected.  I didn't anticipate being hooked on purses.  I used to carry what ever was big and didn't care about the way it looked.  It was going into my locker as soon as I got to work, so what was the big deal? Oh there was the occasional nice bag or the "shocker" for fun (like the purse I LOVE with the painting "The Birth of Venus" on it, the guys called it a porn bag because the famous painting does have a somewhat nude woman on it.  Its art, not porn. Its Bottichelli for goodness sake!!) Now I enjoy a nice purse as much as for how it looks as for its function. 

There have been so many changes.  I've softened up a little. I'm not as rough around the edges as I once was.  I find I can't watch some of the violent movies that I once did, and I have more nightmares now, but I also find that I am alot easier going and less stressed.  Slowly my wardrobe is becoming less fire department t-shirts and more girlie things.  I don't talk about calls I ran non-stop anymore (its hockey now LOL), and I spend time doing more girlie things like shopping or crafting than I did.

So maybe my metamorphosis was something that was long overdue.  Change isn't all bad. Don't believe me, just ask Bubba Hyde, or uh, Barney Jeckle, or whoever he is....

10 January 2012

Equation for Screwed

(C+I)x(U+N)= Screwed
 where C= Chronic  I= Illness U= Under/unemployed and N= No Health Insurance.....

Ok, so I have never been that good at math but I AM an unfortunate expert in the mathematics's of no health coverage.  I have been uninsured before, and unemployed/underemployed before, it was tough ESPECIALLY since when I got sick.  Then I did not have a chronic illness, such as Meniere's, as I do now.  Back then it was just the standard stuff that went wrong.  Fast forward a few years and I'm looking at a new equation, and prices have only gone up.

I get asked things like "why didn't you COBRA?" It was because we were not sure there would be any disability insurance income before the deadline, and to COBRA would have been literally more than 3/4 of my husband's take home.  That would have left us with exactly enough to eat, but no other bills. And it would have been rice and beans at that.

The next question I am asked, "Why don't you just go get a private insurance policy?"  Because I am "uninsurable" with my condition for most companies, factor in my weight and PCOS, and no company will insure me for any price. I did have one quote for 1200.00 before the Meniere's was diagnosed, but I figured with the 3000.00 deductible and 60/40 co-pays we'd be broke even if we could have afforded it just from the deductible.  (the 10,000.00 deductible plan was only about 350.00 a month but it, like all the rest, wouldn't cover pre-existing conditions)

Only a few ask about the plan for pre-existing conditions that is out there now.  The "state health pool" was the first we looked into.  It was as much, or more than COBRA.  The new federal plan covers a lot.  It has about a 1000.00 deductible and would run about 350 a month.  Doesn't sound too bad, until you look at the whole picture.  I would qualify for that plan because I meet the criteria, but the question of how to pay for it is still on the table.  We can afford ONE of us to have this policy, not both (that's 350 each and separate deductibles).  And with that ONE, we can afford the premium or the deductibles.   Let me explain:  The doctors offices now have signs up stating that "If you can not afford your co-pay, you will have to reschedule."  Upon further investigation, this goes for the amount up to the deductibles as well. So if I don't have the 125.00 for each visit when I get there, I don't get to see the doctor.  Well if I pay 350 a month for insurance, I'm NOT going to have the money for the visit.  It's a great plan for someone that brings home 2000.00 a month or more, but it isn't going to help me if the only stable income we have is less FAR less than that! How do you afford a deductible that is about what you bring home? 

We opted not to get this insurance because my disability insurance policy will run out in the fall, and we would no longer be able to afford the set up.  We thought, at the time anyway, after I graduated with my degree in special education I would find a job right away.  Due to the state making some poor choices even the special education market dried up.  A job that has a 5 year burn out rate on average, a job that needs more teachers than there are to fill the slots, a job with benefits.

So I'm among the ranks of the "underemployed".  I sub when I am called, and pray for a long term slot where I can have a steady income.  With any steady income, however, we run the risk of loosing the disability insurance policy that keeps us afloat when I'm not working.  It's a risk I have to take.  Now I paid for this policy, so I'm not cheating the system, let me clarify here.  It is for exactly what its doing here, and that is to help someone "retrain and retool" when they can no longer do the job they are doing when they got sick.  For me it was being a firefighter. When I was too sick to work anywhere, (and I still have times where this is the case) I applied for Social Security Disability.  I was denied.  I want to work, don't get me wrong, but there are days and weeks where the whole idea of working is absurd because I'm so sick.

Ok, back to health care.  I only go to the doctor when I can afford to pay up front. We don't use credit, so if we don't have the cash, we are screwed.  The doctors office ever so nicely told me, if that happens, just go to the ER.  They HAVE to see you, and you can make payments on the bill for as long as it takes. I'm not going to the ER for some trivial thing like an ear infection or a sore throat. If its stitches or a broken bone, sure, but its not for cold and flu.  Its not.  And if it were something scary, like say chest pains (God forbid), and they "found nothing" they are going to refer me to a doctor I couldn't afford anyway for a follow up.  So this heartburn I've been having, which the doctor will want to run tests to see why, isn't going to get treated anytime soon because the tests are unaffordable.  Sure I can afford a doctor visit, but not the tests needed for a proper diagnosis.  Go to the ER, and they refer you out to a doctor for a follow-up you can't afford. 

We go to the local Urgent Care for a number of reasons.  Its inexpensive, they take a 75 dollar payment towards the total, and the hours are great.  They don't like people like us using it as a regular doctor's office. Not much is said, but its the questions and comments that imply as much.  "Why did you decide to use urgent care and not your regular doctor?", "Don't you have insurance to cover that?" and so on.  My regular doctor's hands are tied because I can't afford his tests, and I have to be available to work at a moments notice so scheduling is always a challenge.

So I look for a job that has good pay and insurance. In the meantime, we find ourselves on the "pray" policy.  Pray you don't get sick or injured.  A scary proposition when you have a chronic illness.

07 January 2012

Nightmares? More Like Nightstallions....

According to the online World English Dictionary, the word “nightmare” is defined as follows:
      1. a terrifying or deeply distressing dream
      2. an event or condidtion resembling a terrifying dream
      3. a thing that is feared
      4. (formally) an evil spirit supposed to harass or suffocate sleeping people


There was a time when nightmares did not plague me as they do now. Sure I had the variations of the dream of showing up to work without pants, and the occasional falling or running away dream but the dreams were never as vivid or as horrifically graphic as they are now. The only exception is the aircraft crash dreams that I have and those closest to me know about those (and they have expanded to include train accidents too). I have had the aircraft dreams since I was 13. I don't count them in the current dream scape. The new ones are graphic, horrible, and almost always involve some aspect of the fire service.

As a firefighter, not that long ago, I never experienced dreams about the calls. I just didn't. Sure I had crazy dreams, and the ones we all have, but never like I have now. You only heard about dreams in the fire station in hushed whispers, so I don't know if what I went through with no dreams is normal, nor do I have anyone like me to compare the current state of my nightly terrors. I used to tell everyone about my crazy and often silly dreams to get good laughs. I got lots of odd looks too. I used to dream of people riding pink donkeys, or chasing monkeys out of their homes, or eating cotton candy while swimming, or, well, you get the idea. Nonsense. Silly crazy and often funny dreams that left me wondering what on earth they were really about. For some reason, not long after I left the fire service, the night terrors began. These were not tied to medicine, food or anything we can determine. They just happened. Horrible, graphic complete with sounds, colors and smells I would remember for days and even weeks later. Some were similar to calls I had been on, others were new manifestations of themes that had never even occurred to me. People being killed in horrific car accidents, terrible illnesses, people being run over by trains, people being killed and maimed in the most disgusting of ways. I often wake up shaking, physically shaking from fear. Sometimes I wake up crying.

And then there are the dreams about the verbal assaults. The captain standing over me calling me slurs, telling me I'm worthless, pushing me, screaming at me, and cursing me. Those are almost always the same as what I knew. I found myself reliving the verbal and emotional abuse over and over again when I closed my eyes. I always woke up from those dreams in tears, and the feeling of worthlessness followed me into the following day.

I wake up my husband when I have these dreams. Thank God he is so understanding. He holds me until I stop shaking and lets me tell him about the dream. For some reason, it helps to keep it from coming back right away if I tell him about it. Sometimes I wake him up before I wake up because I'd crying so hard. Those are the worst dreams. He gently rubs my back or my hair (but not back hair, just to clarify) and talks in slow, soothing tones until I wake up on my own. We have discovered that trying to wake me from the dream makes it worse when I go back to sleep and I wake up really hard.
Now all the dreams aren't terrible. There are the ones that cause me to laugh in my sleep. Some times so hard that it wakes up my sweet husband who cant tell if I'm laughing or crying. Those often leave me laughing most of the day. Since the nightmares started, I don't have too many of those anymore. I used to laugh in my sleep at the station, to the point that everyone would be standing around me and wondering if I had finally lost it! I have to smile when I think about some of those silly dreams.

So last night I endured another bad one. Not so much graphic as traumatic. I woke up shaking, afraid to go back to sleep. I snuggled up to my husband, who held me tight as I described the horror that unfolded, and I drifted off to a more peaceful place. I wish I knew if this was normal. I wish I knew how to make these dreams go away.

06 January 2012

The Sound of Silence

Those that know me know I'm a talker.  Now contrary to popular belief, I DO listen too, but I talk.  I talk a LOT and at great length and depth about many things.  I love to debate and bounce ideas off people, and I enjoy making people laugh with my stupid puns and clever word plays.  Mom and I used to do word plays and now my hubby and I spend time in the car or laying in bed making horribly painful word puns and laughing.  Meniere's includes a symptom that sneaks up on me sometimes: fluctuating hearing loss.  Sure my hearing is dropping off a little at a time, but it also fluctuates every day. It is a strange sensation to wake up to the alarm one morning, and not be able to hear it the next.  It is even stranger to be almost stone deaf when you wake up, and back to the "new normal" by dark. 

The fear of being deaf washes over me like great waves along a stormy coast on those days I can't hear.  I wonder if that is the new normal, or will tomorrow be better.  I have never been one to enjoy silence for extended periods of time.  I prefer to have lots of music or noise around.  It keeps my mind from wondering off into that dark place of self-doubt.  When I had my last hearing test almost a year ago, and it became apparent my hearing was indeed fading, I began to grieve.  I didn't plan on feeling sad, it just happened.  I started to notice the things we take for granted every day: the birds chirping, the sounds the car makes, music I never really liked, and the laughter and soothing voice of my dear husband.  It didn't dawn on me how dangerous not being able to hear was until I walked out in front of a car I didn't see.  I heard a car what sounded like it was far away.  It wasn't.  My husband pulled me back just in the nick of time.  The second time we were in a darkened parking lot and I never heard the car.  I think it was then that the reality of loosing something as important as my hearing became clear.  Sure the decline overall is slow, and I may never be totally deaf, but not being able to hear things like cars is a big deal.  Not hearing the door to the house open, or not being able to understand a student when I sub is a big deal. I forget and leave the water on sometimes, and I don't hear it when I walk down the hall.  I have the TV turned up so loud some days I'm sure one of the busy body neighbors across the street will hear it while delivering religious tracks to save my Methodist soul.  (I didn't know it needed saving, I thought Jesus was Jesus, but that's another story).  I may not hear the cat if she gets closed up in a closet, and forget hearing my cell phone in my pocket. 

I have to make little changes to how I function as I go.  I'm learning to read lips.  I keep the kitchen timer with me if I have to leave the stove for a moment.  My kitten is my most reliable alarm clock.  She paws me when I don't hear mine go off (she has it down to the minute so I don't even need it really).  I double and triple check the closets and porch so that I don't loose my dear Artemis in some closed up place.  I take it day to day, not knowing what each day will bring.  I don't sing as loud in church anymore because I sound so horrible now that I can't hear the music as well (not that I sounded great to begin with, but I digress). And I wonder what its going to be like when the day comes when I have to get a hearing aid.  I'm only thirty-four, and I'm thinking about my hearing like I'm seventy-four. 

I pray I won't ever wake up to no sounds again.  Its happened before and it was frightening. I pray I won't need hearing aids or an implant, and I pray I won't need surgery to remove the inner workings of my ears so that I can live comfortably, but be deaf in the process.  I beg God every night I won't loose anymore independence than I already have. The odds are not in my favor. 

So I sit at the computer and listen.  I can hear the clicking of the keys, the hum of the router and even the clock on the wall ticking.  I can sometimes hear the video game my hubby is playing, but I can't make out the words.  Today is a good day.  Tonight when I go to bed, I will lay on my "good" side and the only thing I will hear is my dear husband's silly puns, oh and the ringing.  The ringing never quite goes away. I won't hear Artemis playing (unless its really loud), I won't hear the cars on the road, and I won't hear the phone should it ring.  When I lay on my "bad" side, I will hear most of those things, though they will seem so far away.  

The one thing I will listen for, every morning when I awake, is the sound of silence. Its then that I will wonder if yesterday is the last thing I will have ever heard. So just in case, I try to say "I love you" just before I drift off so if I do wake up deaf, the last thing I will have heard is my hubby say "I love you too". 

Hockey as Therapy

Sounds hokey right?  Hockey as therapy?  It makes sense, sort of, at least for me.  For a very long time I spent every waking hour living and breathing my job as a firefighter.  I loved it, and so therefore I lived it. Not long before I met my wonderful husband, I started to doubt my career path alittle.  I was working two firefighting jobs, one full-time and one part-time, and though the part-time set up was mostly a dream for me, the full-time set up was a nightmare that unfolded every shift at the feet of an abusive captain.  Lots went on the last two years, but I continued to cling to the love of a job that didnt love me.  I truly enjoyed the shock factor when I told people what I did for a living.  I loved helping people.  I loved driving the "big red trucks".  I loved the idea that I was one of just a handful of women in that line of work and one of an even fewer number of women that was Aircraft Rescue and Firefighting (ARFF).  I fought tooth and nail to qualify for the job, and then had to fight like crazy to keep it.

Despite the tough two years at the end, I still lived and breathed the job.  Then it all came to an abrupt end. The part-time job fizzled out soon after the full-time job was over too.  My heart was broken.  After my last day at the airport, I never went back. It would be too painful, I reasoned, to stand again among those trucks. Then I got a job offer to be an assistant to a young man with autism.  Now I loved the kids, I loved working with this young man, but again I became the target of a bully.  Other people saw it and were apalled.  I kept my mouth shut and my head down (as my dad suggested) and finished out the semester.  I had nothing to occupy my time.  We knew by this point that mom had terminal cancer.  This was the Thanksgiving news right after I lost my job. We thought we had some time. Sometime in March, as mom's treatment was going good, and I was crying on the way to work most days, my hubby and I decided to go to a hockey game. 

The team was new in town, as in it was the first season, and though we had planned on going for months, so many things had taken our time.  Mainly going to see momma as much as we could. Saint Patrick's Day weekend we went. Then later that month we went again, and even more games at the playoffs.  I was hooked.  We started saving for season tickets about the same time we found out mom had only a few short weeks to live.  All our extra income (like we had much to start with) went to fuel and food as we drove to the hospital and then hospice every day to see her.  Once it was known at work my mom was dying, so many people were so supportive.  One exception comes to mind, but I out lasted her.  

Soon it was over.  Hockey was over for the season, and about eight weeks after that we buried my mom. We scrimped and saved to afford tickets.  And just before the preseason started, we bought two of the "okay" seats.  It gave me something to work towards.  It gave me something to look forward to.  I wasn't looking forward to the holidays, I didnt have a job to look forward to, all I had was the time my hubby and I have a couple times a week. 

My need to be "obsessed" with something was filled as my mind began to collect hockey data. So now rather than pestering people with firefighting nonsense, its hockey.  ECHL southern division hockey to be exact.  I understand it better than football, and its so action packed.  Oh and then there are the fights.  Maybe I fantisize too much about wishing I could "drop the gloves" or "shoulder check into the boards" some of the tyrants that have haunted my life.  None the less, I hockey has saved the earthly being that is me.  (my soul, now that belongs to Jesus, but that is a totally different deal)

So I look at the calendar and see its a week before I get to go to another game.  Oh I cant wait!!

05 January 2012

Stress? Surely Not!

So I have to amend a tiny section of my first post.  One thing most experts agree on is the factor stress plays on The Beast.  Some have attributed stress to early onset, others to making symptoms worse, and still others suggest stress is the cause in some cases.  I know without a doubt that stress played a HUGE factor in my case. 

At the time I began to feel symptoms, ( and did not know I had Meniere's) I was under an unbelievable amount of stress.  My mother was sick, I wasn't getting along with my dad, I was (and I stress was) dating an unsupportive man (not my dear hubby), and I was enduring untold amounts of verbal and mental abuse at a job I lived for.   Even though by the time the "big spin" sent me reeling, the damage was done, I had symptoms off and on for over a year before I began to have symptoms all the time. At that point, I was transferred to another shift with a less aggressive and not abusive captain.  I had been married all of 6 months when I began to have phantom ear infections.  No fever, nothing showed up upon examination, but for weeks at a time I had ringing, fullness, pain and I felt like crap.  Doctor visits left me with a handful of antibiotics, Advil, and more questions than I had answers. 
It was just a few days after having run one of the worst calls of my career that the "big spin" happened.  I was again on antibiotics for the phantom ear infection, and had missed work two shifts prior for a bad ear ache. I had seen a mother and her two toddlers killed in a nasty interstate roll-over just a few minutes after they had left the church from being baptised.  The babies were wearing white.  It was traumatic, and I spent the next day (as I often did on the weekends off shift) crying.  The nightmares came later, but the total heartbreak for the father (who walked away) over loosing his entire family in one accident was all at once tremendous.   It was the last call I ever ran.  The next shift I worked was quiet, then my career was over.   I walked out of the fire station for the last time, never to return, on my first wedding anniversary.  
It was hard for me to walk, as my balance was even worse than now, and I was sick all the time from the dizzies.  Looking back, I can see how the events leading up to the final straw were so clear, though at the time they were hidden behind a new marriage, the immediate loss of my father-in-law, the grief of my new husband, and my habit of trying to stay out of sight at work to avoid being screamed at (or have things thrown at me).  I cried as if I had lost someone I loved. In a way I had.  I had dedicated 11 years of my life serving my country through selfless service to my community.  My body had paid a price, my mind paid a price, and I'm not sure but I think even my soul paid a price.  You cant be an outsider for 11 years, you cant be the leper, if you will, and not feel as if you have lost a piece of yourself when its all at once over.  I knew I wasn't welcome by everyone. I knew there was no reason other than I was "ill equipped" to be a "fireman" if you get my meaning.  I also knew it brought me great joy and a sense of pride to do something to help others, even at my own expense.  My dear husband couldn't understand why I was so upset over loosing a job where I was so often treated like a second-class citizen.  Stockholm syndrome maybe? A impenetrable sense of duty? Stupidity?  Fear?  What ever the reason, I endured the stress, both physical and mental for a long time before my body had had enough. 
So maybe stress was the deciding factor for my case.  I cant say I would do it all over the same way if given a chance to go back.  I can think of a lot of things I would change. I don't know if it would make a difference in how Meniere's factored in to all of this, but I have to wonder.  Its been more than 18 months since I walked away from the fire service. (Walked, staggered, who's counting really? ) Though I still miss the excitement, and the pride of a job well done, I don't miss the abuse or the stress.

Let me introduce you to my enemy Meniere's....

Ok, so the idea of writing a blog about what its like to have Meniere's Disease seems kind of whiny to me, but I know for a fact that most people haven't heard of it, and if they have, they have never experienced the drama and trauma of every day living with a balance and hearing disorder. 

So let me give you a quick run down on what Meniere's is:
Ménière’s disease is a disorder of the inner ear that causes severe dizziness (vertigo), ringing in the ears (tinnitus), hearing loss, and a feeling of fullness or congestion in the ear. Ménière’s disease usually affects only one ear.

Attacks of dizziness may come on suddenly or after a short period of tinnitus or muffled hearing. Some people will have single attacks of dizziness separated by long periods of time. Others may experience many attacks closer together over a number of days. Some people with Ménière’s disease have vertigo so extreme that they lose their balance and fall. These episodes are called “drop attacks.”

Ménière’s disease can develop at any age, but it is more likely to happen to adults between 40 and 60 years of age. The National Institute on Deafness and Other Communication Disorders (NIDCD) estimates that approximately 615,000 individuals in the United States are currently diagnosed with Ménière’s disease and that 45,500 cases are newly diagnosed each year.
  (quoted from http://www.nidcd.nih.gov/health/balance/pages/meniere.aspx )

That's the short, description.  It sounds lousy to be sure, but not life changing right?  Wrong.  The description doesn't do justice to the weeks of feeling sea-sick, not being able to walk straight, the pain in the ears, the hearing loss, and the seemingly at random attacks of full-blown world spinning puking your guts out vertigo.  It doesn't describe the need to reschedule your life around having to take a "water pill", or the having to let go of salty foods to help prevent another attack.  It doesn't describe how you have no balance in the dark, or how even standing during the national anthem gets you funny looks because you sway as if you had been drinking.  The new onset of car sickness is always a treat, and the exhausted feeling you have most of the time when you have "bad dizzy days" is never seen in those medical journals, but most of us that have Meniere's deal with it.  You see our bodies have to work SO hard to compensate for the false or missing information our vestibular system sends to the brain, it is physically exhausting.  Then there is the hearing loss.  You don't know how bad it is until you don't hear a car coming and step out into its path.  You cant hear conversations in a slightly noisy place anymore, and as weird as it may sound, even though you cant hear, loud noises hurt.  Bad.

For me, most days I'm a little off balance, my ears ring (yes both ears are affected) and the TV has to be turned up really loud.  I get "looks" because I stagger a lot when I walk because my balance is so bad, and I cant close my eyes at church to pray because most of my balance now is visual and I will tip over. My ears feel full all the time, and on not so good days, they hurt.  On the bad days it feels like an ear infection.  On really bad days, I'm too sick to get out of bed for several days really, but I try to anyway.  On the vertigo days, I spend those in the bathroom throwing up, or on the couch too tired to move from the meds that stop the spinning for a while.   I am not active as I once was.  Going for a walk can set it off for me, and sometimes it takes several days for it to set off a full blown attack, so I get in a good week of walking before the puke-fest begins.  Then its a couple of weeks before I feel like doing anything again. 

Today is a good day.  I only have the normal ringing and only a mild discomfort in my ears.  My balance is shot, but that's everyday. My hearing is slowly sliding towards deafness.  Its a slow decline, with the lower frequencies dropping off first. I notice things like not being able to hear alarm clocks, and not hearing cars, or the radio volume in the car is now set at "33" where it used to be set at "19".

(Oh and there is a distinct difference between "vertigo" and "dizzy".  Dizzy is a feeling of being off balance.  Vertigo is a full blown room spinning nightmare.   )

No one knows what causes Meniere's for sure.  Some think its genetic (it tends to run in families), others think its viral or an autoimmune reaction, others think it is caused by some type of trauma to the inner ear.  For some diet and medication is enough to keep it at bay.  For others surgery is required.  Many will need hearing aids, others will go totally deaf. Some rebound and have a remission for no reason, others are plagued with the beast for the rest of their lives.  There is no "cure".  Only treatment of symptoms and surgeries to eliminate the inner workings of the ear are available for this monster.  Although some people I know and love think it is caused by being overweight, there is NO evidence that this is the case. Just thought I'd clear that up.  :-)   Its a little different with every case so just because "Aunt Suzie" was able to master it, doesn't mean that "Billy" will. 

Some of you know it was because of Meniere's I lost my job as a firefighter.  It got that bad.  Because of the uncertain nature of the disease, we don't know how bad it will get, how deaf I will become, or anything other than what I feel day to day. 

So there you have it.  Meniere's from one who has it.  You have now had a short introduction to "The Beast".  I hope you never get to know it like I have.