Now posting on Wordpress

If you're interested, I've decided to post on Wordpress.  The link is...
http://fleetlydreaming.wordpress.com/

Love Blogger for following other blogs but Wordpress is making things easier as far as posting.  Come join me!!  Would love to have some feedback!

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…

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.  

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!

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.

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. 

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.

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!

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. 

Cuteness

Doesn't get much better than a beautiful spring day with your kids...

Meniere's and Antivirals-Week One

It's been a week now.  I've been taking Acyclovir 800mg 3x/day.  So far I can't tell any major difference.  About day 3 into it, I had a great day where I felt "normal" and was able to get out and play with the kids.  It was awesome but I'm not so sure I can chalk that up to the new medication.  Even before the medication, I would occasionally have a "good" day like that.  I do feel a little more stable getting around the house.  I'm not holding to things as much but again, still hard to say if that's just the natural course of this or the medicine.  Yesterday, I had a very busy afternoon with having to take the kids to the doctor and dentist.  I got pretty dizzy during all of that and had to take 1mg of Valium.  I haven't noticed any change in hearing or my tinnitus.  My tinnitus has been extremely loud since about a week before I started this medication.  I'm dizzy and tired this morning.  I have read that some people get worse before they get better.  I've also read that the longer you have this disease, the longer it takes to notice any changes with the Acyclovir.  I've had this for over 12 years so it may take me awhile.

Side effects noted so far have been drowsiness and I'm sleeping a lot more.  I can easily sleep 10-11 hours a night.  The Acyclovir also seems to be causing some minor gastrointestinal problems but nothing serious and no nausea. 

So that's week one.  I have a busy afternoon today as well.  We'll see how it goes and I plan to report back again in another week to see if anything has changed.  Of course, if I notice anything significant before then, I'll be back to write about it when it happens.

Great Dr's Visit-Starting Antivirals!

Wow, what a long but great day!  My hearing test and ECoG results indicate that I am not bilateral!  Yay!!  My right ear (good one) is doing great.  My doctor thinks the pressure I'm feeling in it is related to my TMJ so I'm going to wear my little mouth guard for awhile and see if it helps.  The hearing in my left ear was worse but I'm okay with that because the results for my right ear were so good.  The audiologist described it as severe mixed loss.  80dB loss in the lower frequencies.  Speech discrimination at 85dB was 68%. 

After getting these results, my doctor was very happy for me and said he was willing to give me one gentamicin injection.  He's pretty anti-anything destructive because he's seen too many people have destructive procedures done, then go bilateral and end up in wheelchairs.  He said that since my right ear is so good that he was willing to give me a one-time, low-dose gent injection.  I was thrilled he was willing to do that.  I've been so miserable lately, I was prepared to beg.  But before we do that...

He agreed to prescribe antivirals for me!!!  I couldn't believe it.  I had asked him once a couple years ago and he politely and reasonably said no.  Now that there are generics available and the risk of side effects are so low, he said "sure, let's try it"  Whoa!  I was shocked.  He said he honestly didn't think it would work, but at this point, I had nothing left to lose.  I was prescribed Acyclovir.  800mg 3x/day for 2-3 weeks, then down to a maintenance dose of 400mg for a couple weeks.  If this doesn't work, then I have my gent injection scheduled for May 25th.  I'm so thrilled to be moving forward and trying something to stop this off-balance, dizziness, and nausea.

I think it helped that when I asked him about antivirals that I told him up front that I knew chances were they wouldn't work but that I wanted to exhaust my possibilities before I did anything destructive.  He kind of laughed and said, "if this works, I'll pop open a bottle of champagne for you!"  and then went on to say he would prescribe them for his next patient.  Yikes, I really hope they do some good for me.  I really don't want to ruin anyone else's chances of trying them.  So many people have benefitted from antivirals.  I plan to post on my progression over the next few weeks.  An honest telling of any side effects, new symptoms, improvement of symptoms, etc. 

Here's a link to a great compilation of resources that may be of interest or help to anyone who wants to give antivirals a try...

http://www.menieres.org/forum/index.php/topic,23217.0.html

I had e-mailed this to my doctor yesterday but he didn't have a chance to read it.  From a scientist's point of view, many of the studies are flawed.  However, there's still good information in them.  It's the personal success studies that intrigued me the most. 

Big Day Tomorrow-ECoG and Hearing Test

Tomorrow I am scheduled for a hearing test and a ECoG test.  I've had numerous hearing tests but the ECoG is a new one for me.  From what I understand, they put electrodes in your ear and can determine, with some degree of error, whether or not you have Meniere's in that ear.  I am only having it done in my "good" ear.  I have been counting down the days until this test because I am so desperate for answers.  Now that I'm facing it tomorrow, I'm a mess.  I'm nervous.  Prone to fits of crying.  The stress around me is not helping things either. 

I have myself convinced of the worst news.  My instability has been so bad and I have this strange but intense pressure and pain deep inside my "good" ear that I've just assumed I've fallen into that oh so lucky 15% that go bilateral.  (15% is my doctor's estimate, some are as high as 50%.)  The hearing test will likely be the ultimate give away in determining the status of my ear.  My right ear, which is my good ear, has held steady with great hearing throughout the 12 years of having this.  If there's any decline in the lower frequencies, then that's a pretty sure bet, that ear is going too. 

I spent this past weekend at 2 separate kid's birthday parties.  On Saturday, I barely made it to the party as I was so off-balance.  Once I got there, I just sat in the same chair pretty much the whole time and took some Valium to help.  On Sunday, at the other party, I had to move around more and had to take my afternoon Klonopin dose early and take more Valium than usual to get through.  It was at this party that I noticed my hearing was off.  There was a lot of background noise as you can imagine.  Lots of adults talking, kids playing and I had a hard time understanding people when they tried to talk to me.  Come to think of it, I noticed this Saturday as well but the problem there was the loud background music that was being played. 

What do you do when you find out you are bilateral?  How do you progress with treatment from there?  Also, if my wishes come true and I'm not bilateral, what's next for me?  How do I get relief from these latest symptoms?  I am tired of waiting this out.  I'm ready to move on to another treatment.  The good thing about my doctor is that he's looking at the long-term and is able to "talk me down" from doing anything drastic, like major surgery, because he's looking at potential problems in the future.  Meanwhile, I'm so impatient, I'm willing to do just about anything to get some relief and get back to where I was before.

Another good Meniere's website

This one was pointed out to me by Dr. Burcon.  Good site, good info.

www.menieresresearch.com

Consider all the possibilities out there when fighting this disease.  You never know which one will work for you.

Edison quote

"If we all did the things we are capable of, we would astound ourselves."

- Thomas Edison

Meniere's and Related Research

I find this study very compelling.  Really want to discuss this with my doctor.  The idea of being able to regrow and regenerate the cells necessary for hearing and possibly balance is amazing and from I understand not far from becoming reality.  This is one link to a study being done in the U.S.
http://depts.washington.edu/hearing/HRI.php

I know similar research is being done elsewhere.  It's exciting and gives me a glimmer of hope that maybe I won't be like this forever.

There's also a current study being done on a better delivery method of dexamethasone to the inner ear.  Instead of liquid form, it's in a gel form and therefore stays in the ear and acts over a longer period of time.  This trial is taking place across the U.S. and I'm also interested to see what comes of it.
http://clinicaltrials.gov/ct2/show/NCT01084525?term=vertigo&rank=14

I feel somewhat comforted that somebody out there is paying attention to this dreaded disease.  Granted, the motivation may be money and these things aren't necessarily a cure, but any information that can be gained is useful.  Whether the experiment works or not, you're moving forward.  That's the nature of science.  I also just learned of a lab in Australia that is going to be solely devoted to the study of Meniere's Disease and what causes it.  Go Australia!  Here's a link for that...
http://www.medfac.usyd.edu.au/people/academics/profiles/danielbrown.php

I found all these links through the people at menieres.org.  It's really an amazing support group and resource for people with Meniere's.   Some people on the site are for some reason disgruntled about some of these studies.  They feel corporate greed is the driving force.  They feel that more attention should be paid to find the cause of this disease.  I agree somewhat but I also accept the reality of how the process works.  If someone can find a drug that can even relieve part of our suffering, I'm all for it.  At this point, if someone said, "here's a pill.  You won't be cured but your dizziness will ease up and you can be almost normal again."  I'd be all over it.  I'd say thank you and now please get back to work.  I'm so tired of living like this.  These attempts to learn anything at all about Meniere's give me hope.  That's huge and shouldn't be discounted.

Meniere's Poem-From a Spouse's View

I read this on www.menieres.org and found it very moving.  Unfortunately, I do not know the name of the person who wrote it.  He only gives his forum name which is WifesOnFloor.  He titled his thread simply:  Angelea

Why are you on the floor vomiting?  Is this a hangover?
What is the cause of this?
You have what?  I think your ears are beautiful; you don’t have man-ears…
Oh, Meniere’s, what is that?  A disease?  No?  A syndrome?  A collection of God-awful symptoms?  Why are you like this?
I see…nobody knows.
Ok, so it’s a fluid build-up...or wait, it’s a virus is it?  OK, no, it’s a kink in your neck?  No?  Yes? 
I see, nobody knows.

The kids want to know why you are on the floor again.  I told them about your man-ears.  I’m kidding, I love your ears.  I married you for your ears.  I married you for your eyes.  I married you for all of you, till death do us part.

I will hold the bucket with one hand and the back of your head with the other as you retch through the night.  I will wait with you until the room stops spinning long enough to half-carry you to the restroom so you can finally relieve yourself.  I will bring you anything you need in your state of paralysis, till death do us part.

Low-salt?  Check.  Diuretics?  Check.  Lysine?  Check.  Acyclovir?  Check.  NUCCA?  Check.  Dexamethasone?  Check.  Gentamicin?  Check.

Why are you on the floor?  Why are you vomiting?   

I married you for your ears, till death do us part.

 This brought tears to my eyes because I imagine my husband has similar thoughts.  He never really says anything but he was there for me through many of my bad vertigo attacks in the beginning.  Back before we were even married and he could've very easily walked away. 

To the author of this-sorry that I can't give you your proper credit.  If you ever stumble upon this blog and would be willing to give me your name, I would love to credit you for this beautiful work.  And thank you for being there for her.  It isn't easy for our better halves either and it's important for us to remember that.

Meniere's vs. the Zoo!

I did it.  I made it through!  Whew...now I'm beat and would've slept all day if the kids weren't off from school.  It was all worth it though.  We went to the zoo yesterday and had a great time.  I tell ya, Easter Sunday is the time to go.  If you get there near opening time, you have the place almost to yourself for the first couple of hours.  The extra trick for this zoo is to take the tram to the middle and do the far loop first.  So off we went to Africa.  Saw an elephant drinking water.  Two enormous rhinoceroses (rhinoocerosi?).  Moved on through the various baboons, gorillas, etc.  Got to feed giraffes-very cool.  And so on.  I took lots of breaks and had to take a total of 4mg of Valium between about 9:30 and 1:00 before I finally seemed to feel steady.  Also, had to take my second dose of Klonopin a little earlier than usual but it all worked out.  The kids had fun.  The weather was perfect.  They are already looking forward to next year's Easter visit when they will have their lemurs exhibit ready. 

Final score:  Zoo=1, Meniere's=0.  In other words, that's another win for me and I'll gladly take it.

In a Meniere's slump

I don't think I've been this down, literally and metaphorically, with Meniere's since it first hit.  While I am not having the violent vertigo attacks, I am facing a new enemy that I just don't know how to handle.  The floor continues to move.  My head swims suddenly.  I have spent the majority of this week as a captive in my own home.  The only thing I've managed to do each day is go pick up my kids.  Well, that's not entirely true.  On the way home, we stopped by the park a couple times.  They always want to play outside as soon as they get home.  The park is easier for me because I can sit and just let them run wild and not worry about them too much.  Plus the park is really close to where my brother works and my parents live.  Should an emergency arise, they could be there in minutes.  My problem with bringing them straight home and letting them play outside is that all the kids in the neighborhood descend upon us as soon as we hit the driveway.  I then end up babysitting everybody's kids.  And almost without fail, one of my kids either gets hurt or has one of their toys broken by one of the other kids.  Also, I just can't take all that noise and running around me.  At the park, I can distance myself somewhat and this time of year it isn't too crowded yet.

I find myself crying a lot, especially at night because I can't stand this feeling.  I went to the library the other day and had to hold on to the shelves the whole time to keep my balance.  I had to take a Valium and hurry out of there.  It also worries me because I can tell by my husband's reaction that this is something he's never seen in me before either and he's been with me since before this all started. 

I've called my doctor's office and by way of messenger was told that this is unfortunately part of the disease.  He said to go ahead and take the Valium as I needed it for these "flare-ups."  I guess what I may need to impress upon them soon is that this is happening everyday.  If things are no better by the middle of next week, I may call again.  Not sure it would do me any good as I have an appointment on the 20th for a hearing test and a ECoG in my good ear.  I don't think he can do much for me until he has the results of those tests.  Right now, the way I feel, if he said come tomorrow and we'll do the gentamicin injections, I wouldn't hesitate. 

We're supposed to go to the zoo on Sunday with the kids.  We went last year and it was so much fun that we decided to do it again this Easter.  I don't have the slightest idea how I will make it through though.  It is several miles of walking.  All kinds of visual stimulus.  It's also supposed to be about 80 degrees that day.  My plan for now is to pretty much time Valium on a rather constant basis.  It really does help.  I know I'm not supposed to and only save it for times when things are bad but I really don't want to mess up this trip.  The kids are so excited and I love the zoo myself.

Hopefully, I'll be back with a post in a few days with good news about our little excursion!!

Health Update-a Swiftly Tilting Floor...

Haven't written in a while.  Basically, too tired to do it.  Today I feel like I'm on a boat and I most assuredly am not on any seafaring vessel at all.  I keep having these weird moments where it feels like the floor just suddenly tilted and then it will suddently feel as if it is tilting the other way.  Very disconcerting.  For example, last evening, I walked out onto our front porch which is basically a covered deck.  I immediately grabbed onto the railing because I felt like the porch was moving.  I was so convinced that it must be vibrations from either my dog or my children that I told my husband that surely he must feel it too.  He did not.  I was working on accepting this as another step in my "retrain my brain therapy" and then had a scary thought came to mind.  I've read of people with Meniere's reaching the endpoint of their condition where they are left with drop attacks.  These are the kind of attacks where you are suddenly without any warning thrown violently to the floor.  It's not vertigo but it is extremely dangerous.  Many people end up with black eyes, broken bones, bruises, etc.  Also, from what I understand the only cure for this is a VNS (Vestibular Nerve Section) where they cut the nerve in the offending ear completely.  I really hope I'm wrong about this.  I do plan on talking to my doctor about it when I see him again on April 20th.  If things get worse before then, I'll call his office and see what, if anything, can be done in the meantime. 

I have had some good days though.  I've been able to take the kids to the park a couple days.  It's hard to remember that now though when I feel so "swimmy-headed."

***not long after I typed this, I went to take a shower and this weird feeling happened again but with more intensity.  I felt like the shower floor was giving way beneath me.  Then it would feel like the shower was some kind of giant swing and my body was swinging/falling side to side and back and forth.  There was no visual changes and no spinning.  Afterwards, I was extremely dizzy and barely able to make it to bed.  I took a Klonopin and a Valium and felt "normal" within an hour or so.  What are these things and what the heck do they mean?

Ella

Today is Ella's 5th birthday.  We have a running joke around here that we aren't going to let the kids get any older because we want to be able to hug and squeeze them forever.  The kids always tease back that they will always give us hugs and kisses.

Last night, I was talking with Ella and I said, "when you wake up tomorrow, you'll be five!"  She got very sad looking and teary-eyed and said "well, I want to be 4 for part of tomorrow and 5 for the other part."  I said sure, fine, etc.  She said I want to be 4 and 5 for the rest of the days too and her lower lip started trembling.  I was dumbfounded.  What could be upsetting her so much?  I kept asking what's wrong...honey, tell me what's wrong.  She was starting to sob.  I begged her to please tell me why she was crying.  She said, "I don't want to be 5.  I want to stay little for you!!"  I grabbed her up and hugged her tight.  It was hard to hide my own tears at such a sweet and profound thought for a 5-year old.  I told her I couldn't wait for her to be 5 and that I couldn't wait to see all the things she would do as a 5-year old and that no matter how big she got, I was always gonna get my hugs and kisses one way or another.  She started to laugh then and seemed to feel better. 

It's amazing the thoughts that go through our children's heads.  You should never underestimate their intelligence and the depths of their thoughts and feelings.

Happy Birthday Ella...

go and be 5 with all the happiness, curiousity, and excitement it brings!

Meniere's book

I read this on the menieres.org forum.  Haven't read the book myself or heard of it but this describes what I am currently experiencing perfectly.  The discussion was on burnout.  Supposedly this paragraph describes what happens in the latter stages of Meniere's Disease.  The debilitating vertigo changes into what is described below.  Although, it doesn't apply to everyone.

"This is from her book: Meniere's Diesease What you need to know by P.J. Haybach

Vision
During the course of Meniere's disease, the brain has come to depend on vision for some of the information it used to get from the inner ears.  Any situation that removes or distorts vision may cause some disequilibrium or loss of balance.  Walking with the eyes closed, walking in darkness, trying to look through "stamed" up glasses or goggles, looking through a camera view finder or binoculars or a telescope all have potential for causing problems."

Latest Doctor's Visit

My head is so jumbled, I feel like I just need to let all this spill out in whatever form it will before it gets lost in the vast recesses in my head.

1. I'm still not allowed back to work.  Go back on 4/20 for hearing test and some sort of electrode test that will tell me if I am getting this in my good ear.
2. Dr. May thinks that my balance issues and dizziness is being caused by my right ear trying to compensate for my bad left ear.  I've been officially assigned some unofficial exercises to do to try to retrain my brain...ha!  good luck with that, it's a stubborn booger.  Basically, I am to purposely do things that make me dizzy so my brain can learn to deal with it.  Eventually leading up to walking across rooms with my eyes closed so I'm not dependent on them.  
3. I am to try to not take any valium unless I really need it and possibly cut my Klonopin dosage either to 2 a day or by taking half instead of a whole.  These pills depress the central nervous system therefore not allowing it to compensate.  I can't cut them out completely or I would fall apart, so to speak.
4. He does think my left ear is more or less "burning itself out."  When I asked if that meant I would end up with no balance function in that ear, he said not necessarily.  It would eventually reach a plateau and there's no way to predict where that will be.
5. He is optimistic that I will return to teaching.  Just have no way to tell when.  

That's about all I can do for now.  I am dizzy, nauseous, and exhausted.  Also stopped by the school today to pick up some more work.  Good news there is they have hired a retired teacher to come in and work for me.  That should mean he will pick up and do most of the work and all I will have to do is enter grades in our computerized grade system.  We'll see...

Details in the Fabric

 really love these lyrics and this song...

Details in the Fabric-Mraz and James Morrison
Calm down
Deep breaths
And get yourself dressed instead
Of running around
And pulling all your threads saying
Breaking yourself up

If it's a broken part, replace it
But, if it's a broken arm then brace it
If it's a broken heart then face it

And hold your own
Know your name
And go your own way
Hold your own
Know your own name
And go your own way

And everything will be fine
Everything will be fine
Mmmhmm

Hang on
Help is on the way
Stay strong
I'm doing everything

Hold your own
Know your name
And go your own way
Hold your own
Know your name
And go your own way

And everything, everything will be fine
Everything

Are the details in the fabric
Are the things that make you panic
Are your thoughts results of static cling?

Are the things that make you blow
Hell, no reason, go on and scream
If you're shocked it's just the fault
Of faulty manufacturing.

Yeah everything will be fine
Everything in no time at all
Everything

Hold your own
And know your name
And go your own way

Are the details in the fabric (Hold your own, know your name)
Are the things that make you panic
Are your thoughts results of static cling? (Go your own way)

Are the details in the fabric (Hold your own, know your name)
Are the things that make you panic (Go your own way)
Is it Mother Nature's sewing machine?

Are the things that make you blow (Hold your own, know your name)
Hell no reason go on and scream
If you're shocked it's just the fault (Go your own way)
Of faulty manufacturing

Everything will be fine
Everything in no time at all
Hearts will hold

Consulting the experts...

Just for the heck of it, I recently sent e-mails to two of the top doctors in the country for Meniere's Disease, Dr. Gacek and Dr. Hain.  I gave them a very brief description of my symptoms and history and asked for their opinions on what to do next.

Dr. Gacek of UMass suggested that my balance problems were the result of my good ear not being able to compensate for my bad ear and that I should go ahead and destroy the remaining function of the balance nerve in my bad ear through gentamicin injections or get a labyrinthectomy.  I am definitely not doing the laby.  But the gent injections have me intrigued.  I don't think my doctor will do them though.  He does not want to do anything destructive in case I do go bilateral.  He says he's seen too many patients either have the injections, or VNS, then go bilateral and end up worse off than they were.  I kind of agree with him but at the same time, I think to myself ...isn't my balance nerve being destroyed anyway by this damned disease?  I go back to see him tomorrow and will ask him again what his opinion is on this.  I also want to ask him what he thinks about "burnout."  Is it real? 

Dr. Hain suggested I pursue the MAV medications and exhaust all those possibilities before I do anything destructive.  Interesting to get two different opinions.  My doctor will likely have a third, completely different opinion.  I have asked him about the possibility of MAV before and he really doesn't think I have that but I may bring it up again tomorrow anyway.

I'm still struggling with dizziness, nausea, and balance issues.  Still trying to avoid MSG but that will take more time before I know if it works or not.  I'm so frustrated and things are about to get a lot more stressful at my school.  I'm still out of work, but my long-term substitute has to leave for at least 2 weeks, if not more.  Which means my boss is going to expect me to pick up a lot of slack.  This will not make my doctor happy at all.  He's already upset that I'm doing as much as I am.  I'm so torn.  Don't know what to do about all that.  Stress is probably my number one aggravator as far as this disease goes.

Sabotaged-hidden MSG

So my appetite is getting better but it's not great.  For this past week or so, the only thing I can stomach at lunch besides maybe some yogurt is some Cheez-It crackers that we buy for my kids.  These are flavored and really, really good.  My dizziness and nausea have been sooo bad lately.  Well, lo and behold, one of the frickin' ingredients in these darned crackers is frickin' MSG!  I'll cross that off my list of things I enjoy but can't have.  We'll see if it makes any major difference or not.  I'm still not convinced MSG is a problem but it makes sense in a lot of ways.  The timing of these dizzy spells does coincide with the crackers (I think).  Stupid me, quit keeping up with my food diary when our other laptop bit the dust. 

But now it is duly noted in this blathering blog of mine.  Argghhh!

Yet another great quote

"A wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from his illnesses."~Hippocrates

Weird Vertigo Attack

Last night, I had the strangest vertigo attack.  I'm hesitant to even refer to it as vertigo but am at a loss as to what else to call it.  I was sitting on my bed when all of the sudden, I got really nauseous and my head got that really heavy feeling that usually means an attack is imminent.  Nothing was spinning yet so I just sat there really still waiting to see what was going on.  The feeling was getting worse so I laid down and stared at one point on my bedroom wall still waiting.  My head felt heavier and I knew if I tried to get up, it would end badly.  I couldn't really move without getting a little spin and more nauseous.  I finally starting taking my Valium and it took 4 mg to calm the feeling in my head.  I also had to take some Zofran to make the nausea go away.  All in all this lasted an hour. 

Of course, now I'm trying to figure out what triggered it.  I know that it may be futile but I always try anyway to find something to point to as a cause.  Was it the hectic weekend I had?  My son's 7th birthday was Sunday.  Was it something I ate when we went out to eat?  I'm usually not affected by food or sodium though.  I have been suspicious of MSG and after doing some research there was some in what I had for lunch.  But I barely ate anything so who knows? 

Someone else suggested to me that this may be burnout.  This person had experienced the same thing and her doctor told her it was burnout.  That's what I'm hoping.  My other choice is always the threat that I'm going bilateral.  I see my doctor next week so I will definitely ask about it.  In the meantime, I hope it doesn't happen again.  I've been dizzy all day and I have to be the primary one to pick up the kids from school this week.  I can't afford to be dizzy.  Argh! 

On the Vitamin D front, I can tell a difference already since I started supplementing.  I'm now 12 days in.  The muscle cramps and joint pain are long gone.  The extreme fatigue has eased up.  Now it's just normal ol' fatigue probably from the Meniere's. 

So that's the latest.  Wish for myself I had better news!

My War With Meniere's-In Honor of Rare Disease Day

I am writing this in honor of Rare Disease Day which is February 28, 2010.  Approximately 1 in 10 people suffer from a rare disease.  Many of them children.  Meniere's Disease is only one of thousands of the rare diseases out there. 

Meniere's Wars-The Saga Continues

We're all familiar with the typical horror movie ending.  The good guy battles endlessly with the bad guy and finally kills him in some heroic manner.  The good guy smiles triumphantly and walks away.  Meanwhile, you're yelling at the screen, "you idiot, he's not dead yet!"  Sure enough the bad guy manages to revive himself and come back again.  The good guys are always so surprised.  Really, good guys?  Have you not watched enough bad horror movies by now to know how this is gonna turn out?  Silly good guys.

So this is where I am with my bad guy, Mr. Meniere's.  Or perhaps I should go with the comic book character Count Vertigo whose powers allowed him to cause his victims to suffer from vertigo.  (Look him up.  Wikipedia don't lie!)  I had Count Vertigo on the run for many years.  Laughing at his demise and how I had my own mysterious superpower that he couldn't penetrate.  In other words, I killed the bad guy and walked away like a fool thinking it was all over.  As it turns out, Count Vertigo has returned for revenge and I find myself once again embroiled in battle.  Except this time, it appears the Count is coming for my good ear and I'm gonna need every trick in the book to beat him. 

I've thrown my usual moves-medication, diet alternative therapies, shots in my ear, and surgery.  The evil Count has tossed them all aside as if they were nothing.  I'm frustrated.  Hope is fading.  This is the part in the movie where you would be saying, "how will she win this one?"  Perhaps even hiding behind your hands, only daring to peek once in a while.  Your heroine is weak and without a way to defend herself. 

I, your heroine, (and yes, I did just refer to myself as a heroine twice, that's right, I went there)  am regrouping.  I've called together my super squad with my version of the Bat Signal (maybe a giant hearing aid in the sky? I've gotta figure that one out.)  The brightest of the bright are on the case.  The leader of my super squad is the best in the land.  His abilities to defeat Count Vertigo are legendary.  He hasn't given up on me or on the complete devastation of Count Vertigo.  His cape is non-traditional, a white lab coat, that flies behind him as he strides into the room to meet with me.  (My super squad also includes my husband and my family, by the way.  They've saved me from many treacherous situations.  I also include Sam because he's only one of a handful to witness a full-blown vertigo attack.  The fact that he didn't puke too makes him "super." Oh and Dwayne too for having to help get me to the hospital after a nasty attack.  Ah, heck, it includes a lot of you out there who have stuck by my side!)

I'm eager to hear our next plan.  Surely, there's something new up his sleeve.  Instead, I'm thrown a curve ball.  We are going to wait and see what the evil Count has planned next.  Maybe, just maybe, he isn't going for the good ear.  Maybe he wants complete destruction of my already  affected ear.  We can't make our move until we know his.  A very wicked game of chess.  I am sent home, to wait and wonder what's coming next. 

At home, I am on high alert for any signs the Count is about to strike.  I am hyperaware of the screeching tinnitus in my bad ear.  I am growing frustrated that when someone is trying to speak to me on my bad side, I can't understand what they are saying.  Every noise seems amplified by twenty.  I get up to do what everyone else deems normal everyday activities and the dizziness sneaks up and reminds me who is running the show right now.  Rare moments of weird noises like air rushing in, or high-pitched squealing, take over my good ear and I think, okay this is it.  Then as suddenly as it comes on, it stops.  My children wonder if I'll ever be "normal" again.  Somewhere deep down, I know I have to fight this alone but realize I need support to do it.  As a heroine, I must be independent, strong, unbeatable.  Besides, who in their right mind would volunteer to help fight this evil monster?  Most people by now have given up on me.  That's the most evil part of this disease.  The Count can make me appear completely normal.  On some days, I can go out and do normal things without consequence.  Then everyone thinks, she's all better.  Then, wham-o, I'm back on my rear-end again.  This is the part of the movie where there would be this montage of me going through all these things.  The part where you would be pretending not to cry although that one tear manages to sneak its way down your cheek.  You deny it.  "I've got something in my eye, that's all." 

The movie ends with a promise of my fearless leader to meet again in a few weeks and reassess our plan.  Will it be more watching and waiting?  Will it mean more testing to try to see what Count Vertigo may have planned next?  Or will I somehow miraculously have defeated him on my own between now and then?  The movie ends without you knowing my fate.  You'll have to buy another ticket and come back for the next installment. 

Until then, be on the lookout for this guy...if you see him, give him a swift kick in the "you-know-whats", would ya?

Vitamin D deficiency

The past couple of weeks have been really bad for me in terms of how I feel.  I have had no appetite and have continued to lose weight.  I feel very weak and at times feel like I could faint, although I haven't.  At times, it got so bad, I was afraid to drive which has never happened before.  I have also been dizzier.  I mentioned this to my Gyn at my appointment last week and he ran some bloodwork and it turns out I am very low on Vitamin D.  Suppposedly this can explain a lot of what I've been feeling lately.  I am now on a regimen of taking 50,000 IUs once a week and 2,000 IUs every day in between.  I am to do this for 12 weeks, then go off the supplementation for 2 weeks and have my blood tested again.  The doctor's office said it was likely this cycle would have to be repeated to get my levels up to where they are supposed to be.

It's been 5 days since I started the Vitamin D supplements and so far, no huge difference.  I'm still exhausted and need more sleep.  I hope it's not long before I can tell a difference.  It's pretty amazing how important Vitamin D is to your body's functioning.  After reading up on it, I think I'll stay on some level of supplements even after my levels are back to normal range.

Also, in my medical news, I saw my ENT last week as well.  He is still not letting me return to work.  In the middle of all this Vitamin D stuff, I've also had an eye infection and a sinus infection and had to take care of two sick kids.  No wonder, I'm tired!!  Anyway, he still doesn't think I'm ready and at this time, I have to agree.  I'm having a great deal of discomfort in my good ear and occasionally, I'll get a high-pitched squealing in that ear that will last about two minutes and then quit.  He didn't come out and say it, but I think that he may think I am going bilateral.  My hearing seems fine in that ear and seems worse in my affected ear so it's really hard to tell what's causing what.  I return in three weeks and really wish he would go ahead with a hearing test.  Oh and I did start back on amitriptyline in hopes it may help with the dizziness.  But for now, I continue to wait.

feeling worse :(

I don't know what the heck is going on but I have been feeling so badly lately.  My appetite has still been off, I'm frequently nauseous, and I've lost another 4-5 pounds in the past week or so-down to around 112 according to scales at home which is very low for me.  I have this constant feeling of light-headedness and feel like I could faint but thankfully I haven't!  I went to my Gyn for my last follow-up post-hysterectomy and they are running some blood tests-checking thyroid, vitamin d, etc.  I also fortunately have an appointment with my ENT this Thursday so hopefully I'll get some kind of answers.

This morning I feel flu-like.  I've been in bed all morning which is horrible but I just can't muster the energy to do anything.  I have to get up soon and shower and go get my kids from school.  I'm a little nervous about that because a few days ago this feeling was so bad, I told my husband I couldn't trust myself to drive.  How incredibly frustrating.  I was feeling better just a couple weeks ago and thought I may be able to return to work next week.  Now that doesn't look like it's gonna happen.  

So it makes me wonder, is this a manifestation of Meniere's?  Am I having some kind of vitamin deficiency like vitamin D or B-12?  Is it my thyroid?  Hopefully, my bloodwork will help shed some light on all of this.  The weather continues to be insane for my area.  I know it contributes to my problems somewhat.  Like today for example, it is incredibly windy and cold.  That change in pressure seems to always get me.  But surely that's not all there is to what I'm currently feeling.

This Stupid Disease

I've had a setback this weekend.  Starting Saturday, that feeling of unsteadiness where I feel better holding on to something when I walk is back.  My right ear which is my good ear has been hurting.  The funny thing about it hurting though is it seems to coincide with weather.  I've had dizziness and a  mini-spin and I just can't stay awake.  My hearing has been off as well.  Last night, it all culminated in a migraine.  This morning I have woken up to that all too familiar pain at the base of my skull/upper neck.  Thinking I should just call my chiropractor and see if that'll help. 

Looking back at my food log, there's nothing glaring that points to this which either means there's either no connection or I haven't found the right trigger.  I go back to my ENT next week.  Wish I could get in sooner.  It's easier to remember how bad this feeling can be while you're in it.  When you're feeling better, you are so grateful and on such a "high" that you can almost overlook a couple days of misery.  Still have a lingering headache today too.  Bleh!!!!!

Beautiful World-Colin Hay

"still this emptiness persists, perhaps this is as good as it gets"

The Gift of Scars

I'm dreaming of being a child again.  When I didn't know much of cruelty and pain.  When I didn't know what it was to watch someone you love slip alway slowly.  When one of the coolest things in the world was to wait by the radio and hear the words "school is closed."  Snow Day!  The days where I spent the whole day outside in the woods playing until I finally heard Mom call us back in.  Tire swings.  Catching crayfish.  Wading in creeks.  Making bike trails.  When the only time you could watch cartoons was Saturday morning so it was a big deal.  Boat rides on the lake.  Spending summer days at the public pool.  My Mom taking us to the library to pick out books which still feels like Christmas to me everytime I go even as an adult.  My Dad taking us on Sundays, all 4, piled into his truck to the closest convenience store and we each got to pick out our own candies and fill a bag.  My own little paper bag full of what I wanted.  Heaven to a child.

Then somewhere along the way, we grow up and life begins to scar us.  Now these scars ultimately shape us and make us who we are.  These scars format out souls, make us unique.  When you look at your scars, they bring back the memory of the event that went with it.  Constant reminders of where we've been and how far we've come and where we have yet to go.

My first memorable scar is on my knee.  A common thing to happen to a child, but this scar brings with it a precious memory.  One of the only ones I have of my grandfather on my dad's side.  I was young, maybe seven.  We weren't allowed to see him much because he was an abusive alcoholic and my grandmother had long since left him.  He had gotten to the point where his addiction and disease was so bad that he was living in an abandonded gas station.  My father decided one day that we should go and visit him.  When we first pulled up, my brothers, sister and I wouldn't get out of the car.  My grandfather sat down in the car with us and I was scared.  He was so skinny, so haggard, and basically a stranger to me.  Eventually we all got out of the car and we kids began to play in the gravel parking lot.  Well, growing up between two brothers, it comes with the territory that you're going to get knocked around a bit.   We were playing a game of keepaway with a football and my older brother told my younger brother to trip me.  My little brother did it and I fell.  I landed on a very sharp rock that went deep in my knee.  Blood started pouring out.  Being a tomboy, I was pretty used to injury but what stands out about this day was that my grandfather ran inside that old gas station and found a rag.  He came back and gently applied pressure to my knee until the bleeding stopped.  That's my only clear memory of him.  Him looking up at me as he knelt on that gravel.  His hand on my knee.  His eyes tired.  A gift really to have that scar on my knee to remember him by.  He died a short time later.  I know we'll meet again one day and he'll be free of his disease and I'll get the pleasure of knowing him.  Knowing the real him.  Not the angry, bitter one consumed by alcohol and depression but the one who cared enough to hold that rag to my little knobby knee.  This child he didn't really know.  This child only connected by biology.

Family-the Most Beautiful Word

Go for it!-great quote

“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be?"- m. williamson

New "diet"-one week in

So I'm horrible at sticking to a diet.  For this to truly to be an elimination diet, I have failed miserably.  Alas, I knew that going in so I tried to make a goal for myself that I could attain-to eliminate aspartame and to avoid msg.  We have done well with grocery store trips not to buy anything with msg in it but I've been out to eat twice now and that's really a no-no unless you purposely order stuff that's msg-free.  At least I didn't eat Chinese.  I have done well with the no aspartame though.  As of now, I can't tell any difference really.  It almost makes me wonder if I have a "sugar" trigger.  Ha! 

I've been keeping all this stuff on a spreadsheet.  My meals, snacks, beverages, weather for the day, stress level, symptoms for the day, and a place for anything else I feel I should note.  Based on one week, I would have to say weather seems to be having the most effect.  We've had a snowstorm and today it's raining.  Yesterday, I had 2 vertigo spells that required valium.  Luckily, the valium did the trick. 

The only other thing I should probably add is some kind of column for my level of activity for the day.  Since I've just come off of 2 surgeries since November, I'm way out of shape.  Over the past week, I've done more than I have since last October.  Could be that it caught up with me yesterday.

I've lost more weight and am still struggling with my lack of appetite.  My Gyn says my appetite should be back to normal in another week or so.  I still have a hard time getting 3 full meals in a day.  Now, I'm down to about 113.  That's okay for now as I'm only 5'3" but if I lose much more, I'm going to start looking rough. 

Bushwalla

yeah, yeah...i know i'm 37 but i can't help it. i still thrive on silliness.   this guy's energy is so contagious, invigorating, and downright fun.  when you see him live, all your worries are gone for awhile.

New "diet"-the early days

I've started a spreadsheet of what I'm eating, drinking, snacking on.  It also includes the weather for the day, my stress level, my symptoms that day and a miscellaneous category.  Although this diet is to mainly get rid of MSG in my diet, I have also cut out all aspartame which came for me in the form of diet cokes.  I have switched to regular sodas which are too sugary for me and will probably soon lead me to drinking more water.  Yay!!  The aspartame withdrawal is causing me some headache problems already.  Starting day one.  Some of the reading I've done on it is pretty scary.  I don't miss it and I'm not addicted but I am not enjoying the headache aspect of this at all. 

When we went to the grocery store this past Sunday, we did try to read through some ingredient lists and avoid the main MSG culprits but MSG comes hidden under so many names!  There's no way we got them all but at least we've gotten started.  We will continue to fine tune it as we go along.  My husband is being supportive. 

My stress levels continue to be high and the weather has been either rainy or very windy most days which signifies a change in barometric pressure.  I'm feeling it in terms of dizziness.  I'm also still pretty weak and have noticed I don't have much stamina when I'm out trying to get things done.  My Gyn told me a couple days ago that this was "deconditioning" and I guess the only way to beat it is to try to get out and do more.  Hard to do when you're dizzy and it's so cold. 

Anyway, that's the early report.  Still don't have my appetite back fully from the last surgery and just being nauseous in general.  Have lost a few pounds and don't need to lose anymore but I'm just not hungry most of the time.  Since this last surgery, there's only been 2 days that I've managed to get 3 full meals in.  Most days I skip a meal or only eat half of what's on my plate.  That may play a role in all this as well.  So many variables...

Is My Diet Affecting My Meniere's?

Over the past few days, I've been wondering if there was a link between MSG and my dizziness.  I had gone a good while without problem when I consumed a meal with MSG in it and within 24 hours, I had some vertigo problems.  However, at the same time, we were experiencing a lot of rain and I know weather can be a factor too.  I've been dizzier today as well and it's been raining all day.  But I've also been thinking back to what I ate yesterday and wondering if there was a connection.

So just out of curiousity and after doing some reading on www.menieres.org/forum, I've decided to cut out all aspartame drinks for a while and to make an effort not to eat anything with MSG in it.  The problem with MSG is that it is hidden under other so many other names like hydrolyzed vegetable protein or yeast extract.  I am already a vegetarian and have been for 18 years now so giving up preserved meats is no big deal at all.  Don't like Chinese food either so no loss there.  We just went grocery shopping and did our best to read labels and avoid anything that had those ingredients.  Overall, I think we did pretty well.  Of course, stress is a major factor and I definitely have a ton of that right now.  Tomorrow especially guarantees to filled with stress-have to argue with supplemental disability insurance company, go to work and grade papers, go to follow-up with my Gyn, and all of this with my kids in tow.  Yikes.

The smart thing for me to do would be to prepare some kind of spreadsheet of my diet, the weather, stress levels, and my symptoms so that I could perhaps determine some kind of correlation.   I am partially inspired to do this by some of the stories I've read of people who cut out gluten or dairy, etc and had a massive reduction in their symptoms.  Some even had a decrease in tinnitus and a dramatic improvement in their hearing.  Many of these people have MAV but not all of them so I figure it's worth a few weeks or so of avoiding certain foods to see what happens.  This will not be a pure elimination diet but it's a good place to start!

What if Earth had rings...

Suppose the Earth got Saturn's Rings

Beautiful (and yes, i'm a nerd, a proud one at that!)

Vertigo sneaks back

I've been under a tremendous amount of stress lately from health to financial to family to losing a pet.  It seems that you name it, I'm dealing with it.  I guess it should be no surprise then that I got hit yesterday by a vertigo attack.  I had just pulled in the garage after picking up my kids.  I don't know why but for some reason that's always the point where I get dizzy or queasy.  I'm fine while I'm driving but when I come to a stop, it's like my body doesn't.  Anyway, at that exact moment, my husband called to give me more stressful financial news and I could feel it all getting worse.  I popped half a valium then and there and got myself and the kids inside.  Thankfully I was still not in a full-fledged attack.  I sat for a minute or two and then got back up to help the kids and the vertigo came back.  This was the falling down, getting ready to spin out of control kind.  I popped another valium, laid down, used my Meniett and amazingly within a few minutes felt better.  I was able to get back up and make dinner and feel as close to normal as I usually feel.  Although that little attack was enough to make me sleep 11 hours last night. 

It's disturbing that it came back like that but my doctor repeatedly tells me stress is the worst thing for me.  I know he's right but how do you avoid it?  The answer must lie in how you deal with it.  Writing about it seems to help me a little.  I think being able to get out the house more would help too.

Music for Relief

Visit Music For Relief

another way to support the relief efforts in haiti.

Meniere's Disease-an Attempt at an Explanation

I wrote this back in April, 2009 and posted it on my Facebook page so my friends could learn about it.  Now I've realized I haven't really explained it anywhere on this blog and thought I should.

 

Some of you know I have this...others have no idea what I'm talking about. I decided for many reasons to gather some information so maybe I can call some attention to this crappy disorder. It's very rare, less than 1% of the population and it is so misunderstood. It's not just dizziness! It's much much worse than that. True vertigo is something you can't really understand unless you've had it. Imagine spinning round and round in an office chair for 30 seconds or so and then try to get up. Then multiply that feeling by at least 1000. It can last for hours and you can't make it stop and you can't get up from wherever you are, so you usually throw up all over yourself. And for many of us, we're always a little dizzy. Dizzy is my normal state. Sounds fun, right? The only good thing about it is that it's not terminal and I am so grateful that this is the battle I have to fight as it could be much worse.

from Wikipedia...
The symptoms of Ménière's are variable; not all sufferers experience the same symptoms. However, so-called "classic Ménière's" is considered to comprise the following four symptoms:[3]

* Periodic episodes of rotary vertigo or dizziness.
* Fluctuating, progressive, unilateral (in one ear) or bilateral (in both ears) hearing loss.
* Unilateral or bilateral tinnitus.
* A sensation of fullness or pressure in one or both ears.

Attacks of vertigo can be severe, incapacitating, and unpredictable (http://calear.com/ear-disorders-menieres-disease-ear-institute-bay-area.php). Attacks of vertigo last no longer than 24 hours. [6] This combines with an increase in volume of tinnitus and temporary, albeit significant, hearing loss. Hearing may improve after an attack, but often becomes progressively worse. Nausea, vomiting, and sweating sometimes accompany vertigo.

Some sufferers experience what are informally known as "drop attacks" — a sudden, severe attack of dizziness or vertigo that causes the sufferer, if not seated, to fall. Patients may also experience the feeling of being pushed or pulled (Pulsion). Some patients may find it impossible to get up for some time, until the attack passes or medication takes effect.

In addition to hearing loss, sounds can seem tinny or distorted, and patients can experience unusual sensitivity to noises (hyperacusis). Some sufferers also experience nystagmus, or uncontrollable rhythmical and jerky eye movements, usually in the horizontal plane, reflecting the essential role of non-visual balance in coordinating eye movements.

Attacks often come in series of a few minutes to a few hours.

Progression

Progression of Ménière's is unpredictable: symptoms may worsen, disappear altogether, or remain the same.[citation needed]

Sufferers whose Ménière's began with one or two of the classic symptoms may develop others with time. Attacks of vertigo can become worse and more frequent over time, resulting in loss of employment, loss of the ability to drive, and inability to travel.[citation needed] Some patients become largely housebound. Hearing loss can become more profound and may become permanent. Some patients become deaf in the affected ear. Tinnitus can also worsen over time. Some patients with unilateral symptoms, as many as fifty percent by some estimates, will develop symptoms in both ears.[citation needed] Some of these will become totally deaf.

Interesting side note: Some famous sufferers include...
Alan Shephard (This is why he was scrubbed from the Apollo 13 mission. However, he returned to space later in his life-a true bada$$), Vincent van Gogh (may be why he cut off his ear), Charles Darwin, Steve Francis (NBA player), Ryan Adams, Kristin Chenoweth, Les Paul, Emily Dickinson, Martin Luther

This is not meant to be a downer. Compared to many people, I do very well with this disease. Some sufferers are often accused of faking this illness, or accused of being rude, or accused of being an alcoholic or drug abuser (because we stumble and fall a lot!). In a lot of ways, that's the worst part about this whole thing. Anyway, hopefully with research, a cure will eventually be found!

Really should give a health update...

As far as the hysterectomy goes, I'm slowly but surely getting there.  Seemed to have developed a bladder infection over the past couple of days.  Guess I'll call the doc in the morning and get it checked out.

So...on Friday, I went for an appointment with my ENT.  He was very happy to hear that I got to keep my ovaries and is cautiously optimistic that by removing the birth control pill from the equation that I may finally get some relief.  He isn't sending me back to work yet but is open to possibly sending me back in mid-February.  It's a little hard to gauge how the Meniere's is doing when you've been in bed for the majority of the past 2 weeks.  I do feel more stable when I'm up and I'm not dizzy all the time.  Is it from the bed rest?  Does it mean I'm getting better?  Did the surgery finally work?  If so, which one?  I don't know the answer.  I'll be testing myself out a good bit over the next couple of days.  I have to get a bunch of papers graded and go over to the school to do a few things.  That'll be a better indication of how I'm progressing.  I'm still on the Klonopin, amitriptyline, and using my Meniett.  I've taken Valium only a few times.  If I'm not better in February, I plan to pursue the MAV route and see what happens.

Getting back to work will be hard and stressful, but I think getting back into the routine will be good for me and for my kids.  I think they are starting to get concerned that I've been gone from work for so long.  They're young but observant little boogers.

Lucy

I had to put my almost 15-year old dog, Lucy, to sleep Friday.  My heart is broken.  I keep looking for her black form lying somewhere near me.  She always had to be near.  Even as her ears, one eye, and her legs began to fail her, she would still hop up and do her best to find me.  Content to just be close.  To be near my scent.  I miss her terribly even though I've known this day was coming for a while now.  Her last couple days were filled with pain and confusion.  She lost the ability to walk and yet, all the wanted was to be near.  We drove her to the vet Friday afternoon and stayed with her until the end and stayed with her broken body after her soul had left.  She licked my hand, I buried my face in her neck while she passed.  Hearing the vet say, "she's gone" will ring in my head for a long time to come.  Seeing her lifeless body on that table will stay with me forever.  Oh please please I hope I did the right thing.  Her ashes will be returned to us and I'll continue to keep her near.  I tell myself she's free of her suffering now.  That she's romping back in the mountains, exploring the woods, barking and herding her friends along...like she loved to do in her youth.  Now I feel a different pain and for me, it is relentless.  I know from losing pets as a child that it'll get easier as time moves forward.  In the meantime, I just go through the motions.

Love you Lucy.  Thanks for all your unwavering love and devotion.  'Til we meet again...