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.