Cholesteatoma... the hidden disease

For those of you who know, or don't know... just some insight to my life since 2008...


Per Wikipedia.... http://en.wikipedia.org/wiki/Cholesteatoma

Cholesteatoma is a destructive and expanding growth consisting of keratinizing squamous epithelium in the middle ear and/ormastoid process.  


So... this means...  I lost my hearing 3 years ago, to be treated for allergies & swimmer's ear 3 times (with 2 different doctors) before finally finding a physician who could truly diagnose & treat me, Dr. Syms, an ENT Neurosurgeon.  Being that this is a destructive mass... it had killed my inner ear bones, hence, the loss of hearing.  Surgery #1... remove the mass & dead bones.  Surgery #2 (6 months later)... remove the re-growth again & implant titanium bones to act as the real ones to help me hear.  In the words of my surgeon... compared to a home run, we got to 3rd base, which is good and as good as we'll get.  Fast forward 2 years, and I've lost my hearing again.  A revision needs to be done to the titanium bones so they touch the ear drum again.  Surgery #3... last week I go in for a simple revision surgery through the ear canal, only to wake up to an incision just like the last 2 surgeries because the mass had re-grown and had to be removed again.  And the tears flowed... 

Incision site (Obviously, this isn't me.)

When they say this is truly the hidden disease, it really is.  I'm guessing 99% of the people reading this have never heard of this, and I'm right there with you.  Some symptoms are like mine were, but can also consist of facial nerve damage, deafness, vertigo, infection, tinnitus, and headaches.  This is definitely not something that you want to let go. 


So my life the last few years... huh?  What did you say?  Can you sit on my left side?  (So impressive on a date, by the way.)  Every day is a struggle to hear; headaches are consistent due to the fact that it's a struggle to hear every day; it's mentally draining.  Then add in surgeries, and you get a whole other world of dizziness, draining, tinnitus, pain, pounding, etc.  The list goes on.  


Over the last few days, I've been so blessed to be surrounded by family & friends who truly love & care about my well being; it's been amazing, even being 1500 miles away from "home."  But through all of this, I'm also learning something else about myself.  I'm a social person; I'm not meant to be at home and alone.  This is taking a toll on my emotional well being; more so because just when I thought I was on the road to never dealing with this again, it's here, again.  And all I can think about it... so when will the mass grow back?  What's next?  How long do I have to supply my sick time at work to allow for another surgery?  Statistics say that 10-20% of cholesteatomas will recur.  So far I'm sitting at 100%, twice over, in 3 years.


So I ask for your prayers & support.  Do some research.  There are some amazing videos on www.youtube.com, if your stomach can handle it.  And if you know someone who is dealing with some of these symptoms and hasn't found relief, press on.  Don't settle.  And be thankful for what you do have in life.

Life's Lessons

Over the past few months, I've been jotting down a few of the lessons I've learned in life.  Some may look familiar, some may not, some you may agree with, and if you don't, that's fine.  But these are things that have hit close to home for me, and I wanted to share.  (I'm sure after I post this, I'll think of a hundred more, but then I'll post another!)

• It's okay to have a few really great friends compared to a hundred mediocre, distrustful ones.
• I hate crash diets and will forever stand my ground that eating right & a little sweat will produce better & more everlasting results.
• Be careful who you share what information with.  Life is so much simpler with less involved.
• People who don't volunteer or give donations for fund raisers bug me.  Stop being selfish. 
• Learn how to accept a compliment.
• Set your coffee maker before you go to bed.  There is nothing better than waking up to freshly brewed coffee at your fingertips.
• Go out to a restaurant or bar alone.  Nerve-wracking & powerful all at once.
• Money can be made.
• Always accept help if it's offered.  Those are the people who truly care.
• Just when you think life can't get any harder or confusing, be prepared; it usually does.
• If your friends &/or family are all telling you the same advice, 99% sure you should listen.  Although we all like to be stubborn & independent, you'll one day be humble enough to admit you should have listened.
• Never forget who you are & what you're worth to the ones who know you the best.  At the end of the day, that's all that matters.
• Stand up for yourself!!!  Once a pushover, always a pushover.

So read, ponder, comment.  

Til next time...

Humble Pie

I know I said last time that I wouldn't wait too long to write again, and oops... there I went again!  And since I have just a few minutes this morning, I'm also going to keep this one short.


The last few weeks have been filled with so much fun including a trip to San Diego with my best friend for my very first visit to Sea World, a long weekend spent at her house with friends from out of town, and most recently, a staycation at a very neat, urban, downtown hotel.  Needless to say, I have not been home a lot, but life has been fun!


Until about 2 weeks ago, life was grand!  But when I found out that indeed, my hearing has been suffering again, and that it's time for a revision surgery, I can honestly say that it brought me to tears.  I thought I was done with this cholesteatoma in 2009, and in fact, had a clear report from the doctor in December.  But God had different plans.  And so I must accept this information, and not live in worry, but instead pray about what's to come, and hope when the surgery happens, that worse news is not to be unveiled.  Surgery will probably be set for September sometime.


And as if a leaky toilet wasn't enough to start off my staycation weekend, 1 week later my A/C goes out in my house.  Thank goodness for wonderful friends to let me stay with them!  After literally sitting in 97 degree house, on the floor, with the fan directly 2' in front of me, trust me, it was still 97 degrees.  But all I can do is be thankful for what I do have, and I'll never take advantage of A/C ever again.  


So I can definitely say, in the last few weeks, humble pie has definitely been served.  Let's hope it doesn't take bad news in our lives to bring us back down to earth & be a little more humble every day.

Clarity

So we all know that this 'blogging' thing is new to me, but I really thought I'd have more time to write more often.  Wait, let me rephrase that... it's not that I don't have the time, I just thought I'd take more time.  So I will try to write more often instead of trying to cram everything in one post in the future.  That being said... there's not one particular thing on my mind this morning, so I'll do my best to summarize the cluster of thoughts happening now.


About a month ago, I had the opportunity to go home to my family & my roots.  I haven't been home in over 6 months, so it was overdue.  When I visit home, it's always pure bliss because I love where I grew up & I love my family more than anything.  It's one of those feelings that one can't truly explain.  Life in the country is so different from where I live now, that now that I've been gone for quite some years, my appreciation overflows more now than ever for that life that I left.  The bright green grass, trees, flowers, cooler temperatures, community, & family atmosphere are just a few aspects that you take for granted until it's gone.

This picture of the two little boys was also my favorite from my weekend back home.  It doesn't get much cuter than this.


While home, I also reluctantly attended my class reunion.  It took me by surprise, but I was glad that I went.  


Since I've been back from that trip, I've started kickball league again (New Kicks on the Block) and we have been having a blast!  It's been so much fun getting to know new people & hanging out with the kickball clan again.  I've also decided to wipe the dust off of my bow & get back into practicing, with hopes to join an indoor league during the hot summer.  


As for the clarity title, the trip back home always provides me with reality & always makes me question where I'm at in life.  Is this where I belong?  Am I living my life with no regrets & purposefully?  So in the last few weeks, I've decided to take a stronger stand for myself; to live how I want to live, surround myself with people & friends who are more respectful and trustworthy, to pick up some old hobbies that I enjoy & make them a priority.   This new leaf that I'm turning has done nothing but bring me pure joy & happiness.  I've also decided to extend the "60 Days of Amy" for the entire summer, which has also lifted a huge weight off my shoulders.  To no longer look for love, but look to reach pure happiness instead.


Til next time my friends...
   

Randomness...

Well, well, I return again, after what seems like an eternity!  Where does the time go?  In fact, I once read somewhere...  if we love our lives & enjoy who we are & what we are doing... why do we always wish for Friday to come, instead of enjoying Monday through Thursdays...  There will come a time in our lives when we'd give anything to be in a condition to work everyday and have fun, no matter what day of the week it is.  Now, after saying this, I'm with you all when thinking... easier said than done.


I haven't had much inspiration to write lately, which is why it's been so long.  So I'll make it quick, with what little that comes to mind.


The dating hiatus... I think it's time to return to that state of mind.  We've all heard the saying that goes something like... the definition of insanity(?) is going about the same situations expecting different results.  It's close anyway.  But it holds true right here, right now in my life.  I need to drop the past.  DROP IT.  And never look back.  And more importantly...  remember that my expectations are not impossible, and I don't deserve less.  And patience is definitely a virtue.  Once again, easier said than done.  


So now that I got the most important stuff out of the way... :)  Rising gas prices, Osama is dead, flooding, white powder being found in envelopes, Japan is radioactive, teenage bullying, etc...  the news is depressing.  But sure makes me thankful for what I have.


Speaking of which...  this weekend we celebrate Mom's.  Mother's day... one of the best days of the year to celebrate these ladies who have given all they have for the love of their children.  Just as my mother has always said... you'll never understand a mother's love until you are one.  So as I love to lift up all the moms and my mother, in specific, it's also a very hard day for some of us who long to be a mother, but haven't yet had that opportunity, or may not ever.  God bless you Moms...  you deserve all the recognition & hope you're all blessed for all that you have.  


And now that I've got misty eyes... I'll stop with the rambling.  Til next time...

As I near 29...

Wow.  It's all I can say.  Do you remember when you were younger (like yesterday for me), thinking that 25 or 30 years old seemed soooo far away?  Well, I'm being hit with reality right now, and a very stern hit at that, as I near 29 years 'young' this weekend.


My life has been nothing but fun filled until now, and I don't expect anything different for the future.  But I definitely never, ever pictured myself living downtown in a city of over 5 million people, working in a huge hospital in a fantastic position, owning my 2nd house, and looking the way I do.  Seriously.  What I DID picture was living much, much closer to my family, in a small town, being married, a mother, driving an suv/mini van,  and playing bus driver to my children.  My, oh my, how things have turned out differently for this life of mine.  But most importantly, I'm completely content with where I'm at right now, and I wouldn't change a thing.  On the positive side, I have learned a multitude of life's lessons throughout the years that have molded me to be who I am today.  And that, my friends, is worth more than words can describe.

So as I embrace my last year in my 20's, I will not change a thing cause I'm loving life & where God has placed me, but I'm always open to change when it's time.  And besides, I've heard from more than one person that the 30's are the best years of our lives, so I say, bring it on!  Let's do this!

Laugh, Dance, Joke

So since being on a dating hiatus, I can honestly say that I haven't had too much of a social life.  Although I've kept busy with friends, work, etc, nothing much else consumed my life when it came to being very social.  But this past weekend crushed all of that after some time spent at Lake Havasu for Spring Break.  


I was extremely hesitant to partake in this fun filled weekend simply due to the fear of the unknown.  But after going and having a ton of fun, I'm so glad I went for many reasons, many of them that made my own mind even more clear with my recent quest & new thought process.


After seeing the multitudes of beautiful men & women prancing around, I was quickly faced with thoughts of low self confidence.  But that quickly passed after I relaxed & remembered that I too, am a beautiful person in my own way.  I was able to laugh, dance, joke, smile, and most importantly, be myself without any worries because I know who I am!!  And all of this fun has led me to be even more confident with myself & push me to get out there & have more fun!  Who knows when my dating hiatus will end, but until then, I will continue to work on my self confidence & ability to get out there & be ME.  Cause let's face it, it's alot better to work to live, then live to work.