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Sunday, June 26, 2011

Live and Learn

I haven’t written in the last few days out of sheer anger.  After realizing that there is nothing I can do about this rage, I decided to get it out of my system and write it down.  What was I so angry about?  Blaming my past and where I am today is just a resentment that I do not need.  I just need to let it go.  Maybe discussing it on here will help eliminate the anger and I can move on.  Some days I am okay with it, and other days, not so much.  I’ve been blaming my illness on the loss of my business (which is another blog in itself), and the current job I have now.  I would think to myself, if things happened differently, then I wouldn’t have gotten sick.  If I wasn’t working in such a dump, then I wouldn’t have gotten sick.  If I didn’t have my business go down the tubes (by the investor’s son taking over and making me an employee, then firing me by locking me out of the building – but that’s another blog in itself), I wouldn’t have gotten sick.  Should have, could have, would have…does it really make a difference, Rob?  These are just resentments which hold back my recovery.

I went back to the Neuroscience Institute on Thursday to meet with my neurologist.  The only good thing that came out of the visit is that I lost 6 pounds.  He informed me that my brain is not compensating as it should and to keep going to physical therapy.  I have to admit that I haven’t been doing my exercises at home like I should.  By the time I get finished with my two jobs at night, I am beat.  It’s around 9:00 pm and I am just too damn tired.  I have to make it happen though.  I do not want to continue living with this, so I can only work at it to get better.  The neurologist said, in his words, that thousands of people get this, and hundreds do not get better.  You, unfortunately, are one of those people…  Great!  I will beat this.

Last night I went into NYC to a sober event and it was pretty loud.  I still do not do well with crowds, but with all of the big changes that happened in NY on Friday, I felt the need to go and be a part of it.  By the time I left the event, which was only 10:00 pm, I was walking like a bobble-head (remember, I hate those things).  The medicine the neurologist put me on does help, but it makes me tired.  I should have taken it before going into NYC.  Live and learn…

Tomorrow another early rise.  Therapy at 7…  Pressing onward.

Wednesday, June 22, 2011

Early Rise

I have to start out by saying that I’ve been overwhelmed by the response people are having to this blog.  I’m glad that I can shed light on this disorder and let people know exactly what I’ve been dealing with for the past 6 months.
June 22, 2011.  5:30 am.  My alarm clock is buzzing and my iPhone backup alarm is blaring, too.  Snooze is not an option this morning.  Get up, shower and buy that cup of black coffee at the Exxon station before heading to Kessler for rehab.  Done!  I’m surprised that I can do this twice a week, because lately I’ve been sleeping like a rock.  One day last week my alarm was going off for almost two hours before I heard it.  Gee, I must have been sleeping on my good ear.  I do like going to PT though.  The people there are great, encouraging and most of all, understanding.  I don’t feel so alone when I’m there.
6:50 am and I pull into the parking lot.  Usually at this time I am the only car there, except for the time there was a gaggle of wild turkey, or the time there was a lone duck strolling the parking lot.  This morning, it’s just me and my cup of coffee.  I try to chill out for a few minutes before heading inside, because I never know exactly how doing these exercises will make me feel.  Lately I’ve been dealing with a lot of nausea. 
I always start with the letter board; two identical pieces of paper on the wall with letters all over it.  No I, J or Qs.  (Don’t ask why, I have no clue.)  The idea is to go through the alphabet 3 times, pointing at one letter on the left, then the next letter on the right, and so on.  I’ve been doing this since I started.  Sometimes I would do this while bouncing on a trampoline.  Much harder, but used to simulate a bump road while driving.  Each time I finish the exercise, I see faint, dark spots in my vision for a few minutes afterward.  Not too sure why.  My PT thinks it may not be Vestibular.  Hummm…
Off to the balance exercises.  Today was something new.  He placed a half shaped balance ball on the treadmill and I am to step up with the left foot 30 times, then 30 with the right.  Thank goodness for the railings.  That was tough.  With that same hideous balancing mechanism, stand on it and do squats.  Now that was a sight to see…  I did it though without losing me coffee.
Tomorrow I am heading back for a follow up visit at the Neuroscience Institute.  I’m a little nervous, since things have been getting worse over the past few weeks.  I remember the neurologist telling me last time I was there that if I was fine, just call and cancel the appointment.  Somewhere deep down I was hoping that I’d be able to do that.  No luck.  But…I will not project.  Tomorrow is not here.  I only have today.
I will keep you all posted on what happens. 

Tuesday, June 21, 2011

From the Beginning...

My nightmare began six months ago.  Nightmare is the only word I can use to describe the living hell I’ve been going through.  Growing up I’ve always heard the expression, “I wouldn’t wish that on my worst enemy”.  Well, that expression couldn’t ring more true than now.
I want to start by saying that I work in an office environment that is not the best kept.  It’s one of those office park buildings where there are no windows, a bunch of cubicles and lots of florescent lighting.  It was during the winter season that my officemates were constantly getting colds, sneezing and coughing.  At the time, the person to my right as well as behind me were the sickest.  Unfortunately, I caught the “bug”.
That weekend I recall feeling like I had the flu.  My body ached from head to toe.  I stayed in bed resting, feeding myself over-the-counter medicine to kick this thing.  By Monday, I was at least able to function, get dressed and head to work.  There, with a box of tissues and my keyboard, I pressed on.  The sneezing and coughing co-workers trotted along, too.  Finally, 6:30 pm and time to go.  I got home, grabbed my green blanket and hit the couch.
Tuesday, January 18th.  It was about 4:00 am and I woke up, still in the same position I was when I laid down.  I opened my eyes and did not expect to see the room spinning.  I have to mention that for years I would get these bouts of dizzy spells, lasting a minute or two.  They were sporadic at first, than grew in frequency.  Around Thanksgiving, it was happening several times a week.  By January, almost daily.
I got off the couch and headed for the bathroom, thinking that it would pass just like the other times.  Something was different…very different.  I noticed that I could barely walk, veering to the left as I made my way down the hall.  Immediately, I started vomiting.  That never happened all the other times.  I broke out in a sweat, sat there and waited for it to stop.  Nothing.  On my hands and knees I waited, vomiting until I was completely empty inside.  I remember being home alone that night, and what’s worse than being sick, alone, and scared?
I went into bed and hoped it would pass.  The spinning was violent, like a spinning I never felt before.  Even with my eyes closed I could feel everything moving to the left.  6:30 am came and time for work.  There was no way I could move, let alone sit at my desk for 9 ½ hours.  I called in sick, and laid there stiff as a board.  My partner got home from an overnight shift and was shocked at the way I looked.  I needed to stay hydrated, but trying to drink water was not happening…  Nothing stayed down.
By day two we went to my GP.  He said it was the flu and gave me an antibiotic, some meclizine for vertigo and said I have to wait it out.  It will pass.  I never recall being so sick.  I barely made it to his office.  The ride, which is only a mile or so, felt like it took hours.  As soon as we parked, I vomited.  I needed assistance walking to the door.  Still, everything was moving to the left.  Once I got into the examining room, I had to lie down and close my eyes. 
I remember not even being able to take my medicine, simply because I could hold a thing down.  By the next night, my partner took me to the ER.  Thank goodness it was empty, and they took me right in.  I have to say that the staff was great.  They began working on me immediately.  IV, medicine for vertigo, blood work, EKG, you name it.  The doctor came in and said that they wanted to do a CAT scan of my brain.  Hearing that, I feared the worst.  My partner just had surgery to remove a kidney two months earlier.  What was going to happen to me?
Hours went by, which, to me, felt like only a minute.  I was surprised when they said I was ok to go home.  What???  Nothing had changed, except for the fact that I was no longer dehydrated and I had to pee really badly.  The ER doctor wanted me to go see my GP again in the morning, which we promptly did.
The CAT scan results stated that there may be an Arachnoid Cyst in the back of my head, so the doctor gave me a card for a neurologist associated with the hospital.  Fearing the worst, I went home and hit the bed.  I was still feeling dizzy.  Not the violent dizzy that I was experiencing, but dizzy enough that it was a chore getting up to go to the bathroom.  I remember lying there several times debating with myself if I could get up or not.  Should I hold it and not deal with moving?  Good idea.
It was around this time that my GP had me go for an MRI which was needed for seeing the neurologist.
I let a week pass, and still the heaviness in my head was there.  I felt drugged.  The brain fog.  I could only be up for a few minutes before I would need that comfort of my bed.  Being up took all the energy out of me.  I wasn’t even able to look in the mirror.  Lifting my head was difficult as I couldn’t focus and made things worse.  I finally had the courage to call the neurologist and was able to get an appointment for the next morning due to cancellations from the snow storm that was happening.  I was more than scared, but I had no choice.
Off to the neurologist with my friend Susan.  Susan took one look at me and couldn’t believe that I was so sick.  I could barely walk, was so stiff, lost weight and was white as the snow.  The doctor did a thorough examination, read my CAT scan and said my sickness had nothing to do with the cyst.  He told me not to worry about it, and that I would be better on Monday.  He diagnosed me with Vestibular Neuritis.  Thinking that he was right, I felt somewhat relieved.  Great…better by Monday.  This was Friday afternoon by the way.
Monday came, than Tuesday, than before I knew it another week passed.  I still felt exactly the same.  Drugged, could barely walk.  What was happening to me?  I called him again and he said, ok, it will be gone in two days.  Nope.  Was this guy nuts?  This is when I became my own doctor.  I do not recommend this for everyone, but I had to do something.  Doing the best I can with a spinning head and my iPhone, I did research on Vestibular Neuritis.  I finally found a site that described exactly what I was going through, how it happens and the recovery process.  Was this it?  The site said it will take a few weeks and everything would be fine.  That was not the case for me.  I couldn’t even walk right, let alone drive.  (I was unable to get into my car for 6 weeks.)  I had to remain hopeful.  At least I knew what I had.
I decided to find another neurologist because those false dates pissed me off.  So, off I went.  This neurologist did the same testing that the first neurologist did, but took the time to explain what the vestibular system did and how this illness took hold of me.  His summation was Vestibular Labyrinthitis, because he felt I had some hearing loss.  I knew that I did, too.  He suggested I see a specialist that deals with vestibular disorders.  One of the names was a doctor at the Neuroscience Institute at JFK Medical Center in Edison, NJ.  Sounded like the right place to try next.  So I did.
I went to my appointment and met with the nicest doctor.  He did a number of tests and confirmed that it was probably Labyrinthitis.  We needed more testing to be positive.  One of the things he did do was called the Eply maneuver.  This is a treatment for BPPV (Benign Paroxysmal Positional Vertigo) which is dizziness generally thought to be due to debris which has collected within a part of the inner ear.  That didn’t help too much.  He gave me a prescription for a battery of tests at JFK Medical Center, and also for vestibular rehabilitation at Kessler.  I was again assured that it would go away soon. 
The following week I checked into the medical center for a day of testing, including the rotary chair (really fun stuff), hearing tests, Electronystagmography (ENG) testing, Vestibular Evoked Myogenic Potential (VEMP) testing, and Computerized Dynamic Post urography (CDP) testing.  Sounds like big stuff, but it wasn’t too bad… well, except for the chair.   Waiting to get the results was driving me crazy.  Finally, I got them. 
I have BPPV in my right ear and Vestibular Labyrrinthitis in my left.  My left ear is only functioning at 29%, and the other is 90 something.  That was a shock to me, especially hearing that the nerve damage is permanent.  I can learn to compensate, but this is what it is…  Wow.
I started PT a few weeks later.  I was scheduled twice a week at 7:00 am.  Working with one of the best in the area for Vestibular disorders, I must say that this place was a lifesaver.  My therapist was amazing, and gave me the encouragement to push through, even when I wanted to give up.  One of the things he helped me get over was the fact that I was being too hard on myself.  I needed that desperately.  I felt as if this handicap was never going to end. 
I’m still going to PT to this day.  I’m going to continue to go until I no longer need it, can balance myself at the end of the day, and not be so tippy.  One of the strangest things this has left me with is what I call the “J” and the upside down “C”.  No one can really explain what this is.  Every time I move my head up, everything I see moves in a “J” formation.  When I tilt my head to the left, everything I see moves in a “C” shape.  Driving is still a bit much.  Don’t get me wrong, I can drive, but not for too long without going batty and wanting to vomit.  Going over bumps makes me feel like those silly bobble-head dolls you see in peoples’ cars.  Ever since I got this, I hate those things!  Can’t even look at them. 
I have to be dead honest.  At times, I just want to cry.  I cannot believe that such an illness like this exists.  It’s a constant feeling in my head, either like a brain fog at times, wobbly, or just pressure.  The weather has an interesting effect on it, too.  On rainy humid day, I’m more out of it.  Sometimes going to public places like the supermarket makes me ill.  It’s such a bizarre feeling inside, yet no one on the outside has any clue…
I want to share my journey through this disorder together.  This is a perfect and healthy way for me to get this out.  I’ve always found my fulfillment in the creative, like acting, making movies and writing.  I have to admit, it has affected the acting a bit.  I’ve done 2 movies since I got sick in January.  The first was a small role in a slapstick comedy where I got to wear over $75K worth of jewelry.  Don’t ask…you have to see the movie (The Grand Theft).  While filming, I was given some line changes, and for the life of me, I could not retain what the hell I was supposed to say.  I got threw it without anyone noticing, or me messing up a take, but it was disheartening to say the least.  I was hoping that it was because I worked at my job all day, and then drove two hours to central Long Island for a 10 hour shoot.  Maybe…
I then got a call to do some additional filming on a movie I did last September.  This one is a mixed martial arts movie.  Of course, I play the sidekick who gets beat up, kicked, punched, and thrown about.  One of the things I had to do was get flipped on the floor by the main character who happens to be autistic.  The director worked with me to make it as realistic as possible without too much “flipping”.  Sorry, I wasn’t up for getting picked up over someone’s head and body slammed.  Thank goodness we got it in the can in about two or three takes.  I saw it recently at a film festival and it looked great.  You can’t even tell I am sick.  Is this what people on the outside see?  Yes…  On the inside, however, it’s completely different.  Here, too, I had a hard time remembering lines. 
I’ll do my best to update this blog on a regular basis.  It’s helping me get this out of my system.  The biggest thing that I want to get across is that if you have this, you are not alone.  You are not crazy.  You are suffering with the same thing I am.  Together, with support, we can go through another day.