Wednesday, May 26, 2010

Me vs. Count Vertigo

 
Marvel Comic's Count Vertigo

Ahhhh, so it comes to this.  The laying of a trap for the villain.  Will we be able to lure him in and finally destroy him once and for all?  That, my friends, is the million dollar question.  He’s a familiar enemy, Count Vertigo, as we’ve danced this little dance before.

My posse of Superheroes and I have learned a lot since our last meeting.  The Count is not coming for my good ear, at least not for now.  His intents are on complete destruction of the one he came for in the first place.  He’s not going to make it an easy defeat.  Digging deep, we’ve thrown every weapon imaginable at him and while he may slink away briefly, he comes swooping right back in with his evil villain laugh and “Ka-pow!”  We lose another battle.  I stand up, my army of heroes behind me, another weapon in hand, and “Bam!” knocked down again.  On occasion, I am taunted with what appears to be victory only to be reminded in the days that follow, that it was fleeting.  A little tease of what life would be like if the Count were gone forever.

This is the scene of my little pretend movie where you, the viewer, would be tense.  Eyes intensely focused on the screen.  Perhaps, yelling out, “don’t give up!” or “Get ‘em, girl!”  Maybe you’re the quiet type and while wringing a tissue through your hands, you’re saying to yourself, “this can’t end this way.  The good guys always win, right?”  In the movies, yes.  I imagine my life to be a movie for that reason alone.

I withdraw, go into hiding, rebuild the mental and emotional fortitude that will be necessary to finally, once and for all, have complete victory.  A meeting is necessary.  A meeting with my top advisor.  The man in the white lab coat cape and the matching shock of thick, white hair.  From behind his glasses, he says with a resigned tone to his voice yet a steely resolve, “it has come to this.  Odds are 90% that it’ll work, but there will be sacrifices to be made.”

“Sacrifices?” I ask. “What kind of sacrifices?”

He lays his comforting hand on my knee, leans in and begins to tell me of his plan.  He has defeated the Count on many occasions.  He has one more weapon to try.  One he almost never uses because he almost never needs to.  He’s that good.  There is great comfort to be had in that.  The plan, you ask?  Impatient, are we?

My humble hero in the lab coat has access to the chemical that Count Vertigo cannot stand.  A Kryptonite to Superman, if you will. I smile cautiously.

“Yes!” you yell, “use it.  Kick his tail!”  But remember, this comes with a price.  No victory is that easy.  This chemical will be injected into the very ear upon which the Count has already wreaked havoc.  There is serious irony here.  This chemical will continue the very same thing that the Count has already begun-destruction of the balance nerve.  This chemical may also further destroy the hearing nerve.

“Wait a minute, that’s what He wants!” Exasperated you sit back in your seat.  Who wrote this movie anyway?  What kind of plan is that?  Hang on, dear friend, hang on.  This is my little movie and like any good movie, I gotta drag things out.

Back to my meeting.  I take a deep breath and ask how such a seemingly absurd plan will help me.  Therein lies the beauty.  It’s a trap!  We will lure in the Count.  Upon the injection of this chemical, he will be drawn in and will not be able to resist one last battle.  He will likely unleash all that he has in his euphoric haze that the chemical will cause.  While he whirls and twirls and sends out his signals with his devious little electronic implant that cause vertigo, nausea, misery…the chemical will secretly be destroying him.  If all goes well, he won’t notice until it is too late.  I picture this scene to be similar to the scene in the Wizard of Oz when the Wicked Witch gets water poured on her.  “I’m melting…” and she disappears into a harmless steam swept away by the slightest breeze.

“Let’s do this,” I say without hesitation.  I lean back in the chair in our superhero headquarters, turn my head to the side.  My last vision a blur of a white labcoat and hair moving around the room, preparing the syringe.  I close my eyes, squeeze my trusty sidekick’s hand, as I feel the cool liquid seep in.  I feel it moving deeper and deeper.  Tickling, crackling, as it moves through.

The sacrifice has begun.  Will it be worth it?  Stay tuned to find out…

Tuesday, May 25, 2010

WordPress or Blogger?

I am experimenting between the two blogging sites.  Trying to decide which I prefer.  They each have uniuqe features I enjoy.  Blogger makes it so easy to follow other blogs and keep up-to-date on them but WordPress has a cool feature where you can track how many people are reading your blog, what search terms led them there, or what website they were referred from, etc.  This has been helpful because now I know that people are really interested in Meniere's and antivirals and also the endolymphatic sac surgery.  Interesting.  I feel I should share more of my experiences with each.

For now, I am more or less posting on both.  However, if you stumble across this site and it seems out of date, try www.fleetlydreaming.wordpress.com and see if I'm caught up there.  I know I will always keep this Blogger account because I really love being able to follow all my favorite blogs so easily.  

Monday, May 24, 2010

Gentamicin Injection Tomorrow!

Hope to soon say bye-bye to scenes like this!

That picture is hard to look at for long, isn’t it?  Can you imagine being in that picture for hours and not being able to look away?  That’s vertigo, my friends.  Or at least, one form of it.
Tomorrow, I’m heading in for my one time, low-dose gentamicin injection to hopefully put an end to this once and for all.  Things seem to be getting progressively worse as the weeks have worn on since I started antivirals about 5 weeks ago.  I think if I were to continue on without doing anything else, I would be back to having full-fledged vertigo attacks again.  I had a mild one the other night.  I woke up about 2am and had to go to the bathroom.  I sat up and the room was spinning, my head felt like it had lead weights attached to it, and I quickly fell back down on the bed.  I grabbed my ever present Valium and stayed still.  I was able to go back to sleep soon thereafter thankfully but when I woke up at 7am, the heavy-headed feeling was still present and when I walked, it felt like my head was leading me around.  Which means I staggered and swerved for a while.

Also, the other day I had gone to pick up my kids from school.  I was sitting in the car waiting for my daughter to be dismissed from Pre-K when I had a quick mini-spin.  I popped a Valium, sat in the car for another 5 minutes.  When I got out to walk across the parking lot, I know I was walking slow, swerving.  The other parents must’ve thought I was drunk or something.  Thankfully, the Valium kicked in quickly and by the time we were back in the car, I was feeling a lot better.

As for the gentamicin tomorrow, I’ve had to make so many contingency plans.  Someone else to pick up the kids.  Someone to come here and watch them.  Someone to be available in case I get really sick.  My husband wanted to make plans for next weekend.  I looked at him and said, you know we can’t do that, don’t you?  He said “I figured we’d just see how you’re doing.”  This infuriated me.  Like I can predict with any accuracy when I’ll get sick from this shot.  He was there when the doctor said the third or fourth day after is usually the worst.  He’s listened to me say that everyone’s recovery is different.  Some are horribly sick.  Some are just very unsteady for several days.  Once again, I was reminded that unless you live this disease, you just can’t get it.  No matter how much you try or how hard you want to, you just can’t.

I plan to post tomorrow, if I can, on how the actual gentamicin injection itself goes.  Then as I am able, I will post how I do afterwards.  Keeping a journal will help me gauge the progress.  I hope this injection does it because if it doesn’t, I don’t think my doctor is willing to do any more shots or do any more serious surgeries.  Keep your fingers crossed for me!

Wednesday, May 19, 2010

Waiting for 'Superman'-the American educational system is failing our kids

As a teacher, this is a topic that I could go on and on about for days.  I can also say that this is a conversation that goes on almost daily in teacher workrooms.  We so clearly see the problem and see that No Child Left Behind is such an utter failure.  Why doesn't our government see this?  I hope this movie sheds some light.  Can't wait to see it.

Friday, May 14, 2010

Meniere's and Valium

Part of the reason for my keeping a blog that is mostly dedicated to Meniere's is to help anybody else is also suffering find some information, and hopefully, some help.  I wanted to quickly share a little trick my wonderful ENT, Dr. John May of Wake Forest Baptist Medical Center, taught me.  He told me that when I feel a vertigo attack coming on to take a Valium and place it under my tongue.  According to him, it gets in the system much faster that way.  I can attest to it's effectiveness.  It has stopped many attacks for me in its tracks. I have 2mg tablets that I usually break in half and place under my tongue and let it dissolve.  Sometimes, I have to repeat the dosage again in a half hour or so.  While I no longer deal with severe vertigo (knock on wood), I still always carry a Valium pill in my pocket everywhere I go due to the severe dizziness I suffer.  It also helps with the bad balance problems that I am currently having. 

For me, Valium has been my saving grace.  If you haven't tried it, I highly recommend you give it a shot.  It could save you a lot of unnecessary suffering. 

Wednesday, May 12, 2010

Meniere's and Antivirals - Week Three

Well, I waited an extra day to post hoping I would have something more concrete to say.  I’ve done the 800mg 3x/day for 3 weeks now.  Today I’ll taper down to 800mg 2x/day.  At this point, I can’t really tell much difference.  I am still having problems with dizziness and my tinnitus is still really loud.  The only area in which there MIGHT be some improvement is hearing.  The distortion seems to have cleared somewhat and some noises seem louder in my affected ear.  Of course, I am hopeful it’s the antivirals working but it could just be normal fluctuation.  Also, if my tinnitus was, for example, a 10 on the loudness scale, it might be a 9 now.  Again, hard to tell if it’s normal fluctuation or if I’ve just gotten used to the new level of loudness it had reached.  I was really hoping my balance issues would’ve, er…”balanced” out by now, but no such luck.  It’s still a good day here or there with mostly bad days.

I wrote on Monday about my awesome hiking and camping trip (yay!) and I am still recovering from that.  Really tired and dizzy from it.  So I feel like that could be interfering with results too.  You play, you pay…I guess.  Still worth it in my opinion.

So sorry to report, no exciting news yet.  But I’m not giving up hope that something will change soon!  I will continue with the 800 mg 2x/day for at least the next 2 weeks.  Then I have to decide whether or not to go ahead with the one time gent injection.  I’ve thought about postponing it but my problem is if I postpone it, it puts me in the summer when I’ll be home alone with my kids and this summer, I don’t have a lot of help that I can fall back on.  (no pun intended)  I’m just thinking of the worst-if I get really sick one or two days from the gent, I don’t want to be home alone with the kids.   I know some people get really sick for a day or two and some people don’t. Usually, if there’s a chance of a bad side effect, I get it so I have to prepare for it.  It would scare my kids to death if they witnessed a full-on vertigo attack and if I can protect them from that then I plan to.  I’ve got two more weeks to decide and that’s good news and a lot of time for something to change.  I’ll post on this in another week and see if there’s any change.  Hopefully, there’ll be no sicknesses or other factors to interfere and I’ll better be able to tell if they are working or not.

Monday, May 10, 2010

Meniere's vs. Table Rock

I am experimenting with another blog site and transferred this over so it may not be aligned correctly.  I am testing out wordpress.com with the blog name www.fleetlydreaming.wordpress.com
VICTORY!!!-made it to the top!

Meniere’s-0, Table Rock-1…Woohoo!  So we set out on Saturday for a camping trip at the Table Rock campgrounds.  I agreed to go with much trepidation.  Not only was I fighting dizziness but I was battling a cold.  The excitement in my kids’ faces was enough to get me to go.  It was going to be my daughter’s first real camping trip after all!  My husband assured me the campsite was very close to the parking lot and I could just sit and hang out while they went out and explored if I didn’t feel up to hiking.   So, off we went!
The first obstacle was the car ride up many long, curvy roads.  I went ahead and took an anti-nausea medication before we left to overcome that.  It was a gorgeous day, clear blue skies that stretched for miles.  However, the wind was ferocious, blowing anywhere from 25-35 mph and gusting higher.  When I first got out of the car, I was a little wobbly but that eased up fairly quickly.
You want me to climb that?

Here, it is.  Table Rock.  A well known landmark in western North Carolina.  Elevation 4,100 ft and one of the most popular climbing destinations in the southeastern United States.  While the hike to the top is only one mile, it is almost all uphill with a rocky trail that requires being careful where you step. We set up camp near the parking lot as promised and proceeded to go explore.  I couldn’t bring myself to stay behind so I ventured out!
the kids leading the way
Have hiking poles, will travel
Enjoying some of the views along the way

With hiking poles, I did really well.  Only had one moment of the mini-spins as we neared the top.  My biggest problem was my knee giving me fits on the way up and especially on the way down.  As we got to the top, I stayed far from the edge and didn’t really look out all that much.  I was nervous but as we “summited,” I felt a little more at ease and relaxed enough to really enjoy the views all around.  It was such an amazingly clear day and we could see nothing but the beautiful Appalachian Mountains stretching out in all directions.
The Gorge

These pictures are just some of the many we took while there.  Pictures don’t do it justice but at the same time, these still speak volumes.  It was a hard hike to the top for the kids and me but it was so worth it to hear my son constantly repeat, “Mommy, it’s so beautiful!”  and “Wow, look at that!”  Fostering a love of nature is so important to my husband and me.  I hope I can do many more of these trips in the future.
I love how lush and green it looks!
Enjoying the view and a well-earned snack!

Tuesday, May 4, 2010

Meniere's and Antivirals - Week Two

First of all, I've been up since 3:30 and it's now 7:30 so I hope this makes some sense.   ;)

Second of all, the basics of the past week...I have continued on the dosage of 800mg 3x/day.  For the past few days, I have been worse.  Especially yesterday.  Dizzier, light-headed, and yesterday including the heavy-headed feeling and some mini-spins.  I'm not sure what to chalk that up to as their as some other factors at play.  Could it be the whole "it gets worse before it gets better" thing?  I sure hope so!!  I know this happens to a lot of people who try antivirals.  I plan to continue for one more week at the same dose before I taper down so still keeping my fingers crossed.  The hearing in my affected ear may be slightly better and slightly less distorted.  My tinnitus is still extremely loud.

But to confuse things a bit, I seem to have had a touch of the sickness my kids have had.  My son had a bad cough due to some inflammation in his lungs and my daughter had a cold and an ear infection.  On and off for the past 5 days or so, maybe more, my chest has been tight and my good ear was hurting.  That has eased up.  Also, yesterday morning, my Meniere's ear had some clear drainage coming out.  It's gone now as well.  So did that make me feel worse?  Don't know.  It was all so mild and variable that I just couldn't say for sure that I was sick.

Just to further add to the mix, I was also very busy this weekend.  My husband had to work very late Friday night and then was gone to a funeral in another state and was gone all day Saturday so I had to do a lot more around the house and care for the kids.  I spent about an hour cleaning out my daughter's toy boxes and closet yesterday and by the end was when I started getting the mini-spins.  So maybe I overdid it?  I don't think so but it's possible.

I'm still having some gastrointestinal problems too.  Mostly very mild but I was woken up at 3:30 with stomach pain and nausea.  It was pretty easily fixed with some Pepto and some Zofran.  But I haven't been able to get back to sleep since.  Feeling pretty dizzy now and hope to take a nice long nap sometime soon before time to go get the kids.

So I guess that's all for now.  Plan to post again in another week or before if something major changes.  As I've mentioned before, I've had this for 12 years so this is probably going to take some more time for me.  Even if this turns out not to work for me, I am so glad that I'm getting to try it.