Mr. Fix-It

So, Mark and I got into an argument the other night (Hi, Honey!). He looked over, noticed I was staring out into space, and asked, "Hey, what's wrong?" It may have been one of those dreadful oh-crap-I-wish-I-hadn't-asked-that-question questions. You know, like when you hear yourself ask your Aunt Bertha how she's doing and before you can retract what was said, she's describing medical procedures and personal hygiene.


Anyway, before he could finish the question, I breathed a sigh of relief and told him exactly what was wrong. I railed for 5 minutes about life being unfair at the moment - pretty much a short-lived temper tantrum. As soon as I inhaled to say more, Mark said, "You don't really feel that way. Everything's okay. You just need to....." [Editorial pause: Is anyone sensing the avalanche that was about to fall?] Mark proceeded to tell me all the things I needed to do to cheer up and see the bright side of things. He put on his Mr. Fix-It hat, got out his tool belt and went right to work repairing my mess. He had somehow come to the erroneous conclusion that we were involved in a 2-way conversation and did not realize that I was rather content with my soliloquy (an utterance or discourse by a person who is talking to himself or herself and is oblivious to any hearers present).


I don't have to get into the details in order to convey to you what happened next. Simply, I didn't need to be fixed. I needed 5 minutes of freedom to say really stupid things that I didn't mean in order to experience some cathartic relief. I just needed to complain and have someone tell me they understood.

Why do our guys feel compelled to fix us and why do we complain if we don't need fixed? In the imortal words of Aristotle, "We are what we repeatedly do." We process life through conversation. Our guys fix things.

Because humans are innately curious, you may be wandering if Mark was kissing the wall that night. No, he wasn't (mainly due to the Law of Arguments that we've mastered over the years. I'll share more about that at a later date if you're interested; actually, I'll share it even if you're not interested). But we did agree on a couple of things. In the future, I'll clue him in when I only need someone to hear me and validate that I'm not nuts. He'll keep the tool belt in check until I invite the repair. Sounds like a good compromise. Kiss. Make up.

The Pursuit of Fineness

According to the dictionary, "fineness" is the state or quality of being fine. Obviously, that definition was written by a man! In case you haven't noticed, the female species is in a continual pursuit of fineness, and this has nothing to do with the definition provided by Webster.

When one of us has just declared bankruptcy and you ask her how she's doing, she says "fine". When one of us is contemplating the murder of her husband and he asks her how she's doing, she says "fine".

Were you able to interpret these responses correctly? If you thought that the woman was indicating that all was okay with the world, you are in serious trouble. Let me break it down for you:

• I'm fine means I'm not fine but I don't want to talk about it so stop asking me questions.
• Everything's fine means that I have way too many things to do and not enough hours in the day to do them but refuse to say no for fear that if I don't do it, someone else will, and they'll most definitely screw it up.
• It's fine: Please pay close attention. This is the most deadly phrase used in the female vocabulary and is reserved exclusively for our husbands. When you do something REALLY boneheaded and you try to apologize or smooth things over, if you hear this phrase, do not....let me repeat....do not walk away thinking things are okay. They're not. It means that at this moment, she's done discussing it with you because she believes you are not smart enough to realize that she is right and you are wrong - and because of this lack of intelligence, any further discussion would be a waste of her precious time. She is currently contemplating revenge in the form of something that will cause severe, long-lasting emotional or physical pain. The only way to avoid this pain is to surrender, understanding that even if you think you're right (and you're not), the consequences are not worth the momentary preservation of pride. Men who do not understand this phrase are condemned to enternal confusion and anguish.

To my girlfriends out there, I ask this question: Why do you suppose we are in this pursuit of fineness? I think that we have somehow convinced ourselves that we are solely responsible for balance in the universe and if we have a bad moment or - heaven forbid - a bad day - that the world will fall into chaos and our families will collapse. So, the next time he does something really stupid, instead of saying, "It's fine," try something like, "No, I didn't want a crockpot for Christmas, but since you bought one, I think I now have the right to ask you to cook in it every day for the next month. Thank you, Chef." It's much better for your psyche and your marriage.

Control yourself!

I now understand why I am afraid of this surgery - aside from the noggin-cracking part. Let me explain....

I finally got the call today w/ a surgery date of January 2nd. After hanging up the phone, I started thinking about all of the plans I needed to make: 1) transition plan for work, 2) dinners made ahead in the freezer, 3) pedicure so I have cute toes during surgery, 4) pretty pajamas to make me feel better in the hospital, 5) hair appointment to change the part in my hair to the other side to cover the incision. It was a methodical list. I started writing this stuff down, like it was the key to a successful recovery. I even jotted down the day of the week that I would accomplish each critical element of my list.

Then I paused for a few minutes. Why am I worrying about the color of my toes or what day I'll be allowed to wash my hair when I may not even have a memory of what happens during the week following surgery????? ......... Sigh....not again, it can't keep coming back to the same thing....control. That blasted shadow I always have lingering behind me. The world's perpetual designated driver. It's true; I need a tiny piece of control in the craziness that's happening. I can't control my body anymore, so I'm holding on to little things that I can still order around like endentured servants. It's like the last thread of a giant rope that I've secretly tied to my pinky finger just in case the One who has the larger part looks away for a second and lets go. Why is it so hard to just close my eyes and untie the thread?

Do you ever struggle with this too or are you one of those rare individuals who could care less about boundaries - someone I greatly admire?? I've always wanted to be the one who could come to a party an hour late, turn in shotty work on assignments that really don't matter, roll out of bed and go to the grocery store in pajama pants, take my kids to Target at 9:30 at night. You know, a real rebel! But alas, control.

I do actually remember a moment in my life (a few years ago) when I gave over complete control to God. Complete, total, unwavering control. It felt wonderful. Peaceful. Perfect. I'm going to pray that between now and January 2nd, I let go of that last thread again and I'll also throw in a prayer for all of you (if indeed you are one of those rule-followers). But I have to warn you that if this happens, if this dreadful prayer is actually affirmed (hold on to your hats!)...........I may have chipped toenail polish and messy hair the next time you see me!

Surgery Date: January 2nd

It's official.  The surgery date is January 2nd!!!  It will be at St. Vincent's on the North side at 9:30 a.m.  I'll be in Neural ICU for the first 24 hours then will be moved to a general room for 3 days - being released on January 6th.

This is the first year in a long time that I've been forced to slow down during Christmas.  I did most of our shopping on-line, didn't send Christmas cards, didn't bake um-teen dozen cookies, am not hosting a big family event and won't have the annual New Years Eve party at our house.  Sure, I miss some of it, but I cherish every moment this time around.  Give it a try.  Slow down a little so that you can be part of your own life rather than watching it pass by.

Update

Over the past week, I've had a few friends ask how I'm feeling and some have commented that I've suspiciously left off comments about symptoms on this blog. That's because talking about it doesn't make it better. :) I'll leave a quick update here then will likely not want to talk about it again until after the surgery. Deal?

I'm tired. I just walked down to the basement w/ Mark and had to stop on the way back upstairs because I didn't have enough energy to make it. Also, Mark and I had a hot date last night that I looked forward to all week; it only took dinner and two stores for me to hit a wall (not literally). I'm sure he didn't find it to be one of our hotter dates. :)

I'm having more trouble w/ balance and have to pay close attention to where I'm walking. Wednesday night, I fell and hit pretty hard for the first time. The sounds in my head are louder with my neck movements sounding like the car I used to drive w/ bad struts. I've had to think more about what I'm eating in order to avoid foods that will be overly loud or blur my vision. For the most part, my vision is okay as long as I'm not overly fatigued. Actually, everything is fine as long as I'm not tired.

I've also found that I'm quicker to anger these days, mainly at myself for being a wuss. It frustrates me when I hear someone say it's okay to have a shorter fuse because I'm sick; in my mind, I'm not actually sick. I am simply missing bone in my head that creates some issues.

When one of our friends was very ill, he wouldn't let anyone visit him in the hospital unless they agreed to remain positive. That's because he was a very smart man. When we focus on possibilities and potential, we can transform and it's through that transformation that I will be back in fighting condition in no time. Sly the Italian Stallion had nothing on me!!!!

Mind over Matter .... or is it Matter over Mind?

As I look back over the past few weeks, my analytical side draws the conclusion that there's a definite link between how we feel emotionally and physically. Sure, there are physical reasons why I feel the way I do, but there has definitely been a correlation between the severity of my symptoms and the way I feel mentally. Does that make me a head-case or do you also find your "mind" controlling your "matter?"

Exhibit A: I experienced the most severe symptoms on the same day that I learned that Dr. Minor at Johns Hopkins was going out of our insurance network and couldn't do the surgery until the end of February. Exhibit B: I received the call from Blue Cross Blue Shield yesterday that approved the surgery and feel wonderful today. Know what I wrote down in my notes during the call? "Good news. God is good." Why do we usually only say that when something goes right? Why don't we say "God is good" when we've had a bad day or when something has gone wrong?? He's the same God who's been hanging w/ us through the ups and downs.


I'll make a pact with all of you today. Let's wake up each day saying "God is good" rather than waiting to see what momentary hand we've been dealt to decide how we feel.

Christmas is coming early this year

Huge answer to prayers!!!!!!

We received a phone call today that started, "Mrs. Yount, Christmas is coming early this year." It was Tim from Blue Cross Blue Shield. He said the surgery was APPROVED!!!! Since when does an insurance company approve a $50k to $60k surgery in a matter of hours???? Tim said that someone from Lilly HR called yesterday and asked that BCBS review my case as quickly as possible.

So here's another twist to the story. I found out yesterday that there is a group of Lilly employees who advocate insurance cases. I sent an email to them and received a reply from a friend of mine in HR who was assigned to help. Out of nearly 40,000 employees, a friend of mine answered. Odds? I'm done figuring them.

My story is not a string of coincidences. It's a brilliant quilt of carefully designed events. Graduate school internship...Audiology degree...cochlear implant research...symptoms...Dr. Minor...Johns Hopkins...SCD...SCD patient in Martinsville...Dr. Ostrowski (graduate internship location)...Lilly HR...Blue Cross Blue Shield........................surgery...............recovery.

The plans of our lives are so colossal compared to the fleeting moments in which we exist. It's impossible for our tiny and short-sighted minds to string together all of the moments in order to understand the bigger picture. But on rare occasions, God gives us a glimpse at the quilt He's making and we see the pattern emerge. It doesn't happen very often but when it does, it's breathtaking.

Are you kidding me?

I was watching television a few days ago (I actually have time to do that right now lol) and found myself mesmerized by a touching commercial. A man and a woman were dancing and talking about the life they would have together once they were married - then a narrator said something like, "Many believe that the home is the first extraordinary purchase of their lives, but it's not. It's all in the ring." What????? Are you kidding me??? Does anyone really believe this?

(Side note: Today's blog thankfully has nothing to do with SCD - I've decided to use it in order to speak for other women who have not asked me to do so. Smile!)

Guys, please don't fall for this stuff. Yes, we love diamonds and nice things, but that doesn't compare to the feeling we get when someone has surprised us by cleaning the house or doing the laundry. Yes, Patrick Dempsey makes our hearts go pitter-pat when he proposes to the woman he loves and puts a ring on her finger the size of a small planet (ok, so for me, it happens when Brett Favre throws a perfect touchdown pass into tight coverage, but you get the point).

And we do want someone to take care of us, but that does not mean that we want you to sign a check for a 6,000 square foot dream home. It means that we want you to tuck us in at night after a hard day, tell us we're beautiful when we're retaining water, let us vent to you when we have to remain strong to everyone else. It never fails to confuse me when I hear men say that they don't understand women. Despite all of our contradictions, most of us are fairly easy to please. Give it a try. Christmas is only 8 days away. [Note to Mark: Remember, I did say that we're easy to please despite our contradictions. One of those contradictions is that despite this blog, if you've bought something sparkly for Christmas, I do NOT want you to return it.]

Friendly Reminder

How many times is it that we need to hear and experience something before we understand it? Seven? Eleven? I can't remember. Today is one of those reminders.

As of last Friday, it had been a week since I had worked at the office. In that time, I had rested enough that I was starting to feel better. I even told Mark that it was possible that the surgery wasn't even necessary. (Stop laughing!) I was starting to believe that maybe all of this was just in my head and that if I just concentrated hard enough on remaining positive and being strong that this could possibly go away. Then today happened....

This is the first day I've been in the office since the 4th of December. I bounded into the office at 6:45 this morning, very happy to sit at my desk and look around at all of the things that make me smile (pictures of my girls, a disco ball, my black patten leather shoe "Grace" award, a mannequin arm, and a flag football trophy). I felt great! I think I made it through 3 emails and one conversation w/ a coworker before I needed a cart to drag my hind-end through the hallway again. :)

So, the next time I say that I don't need this surgery or that I'm "great", you have my permission to offer up a friendly reminder.

Why is it that we learn so slowly? Or is it just me?

Easier Said Than Done

Ever think about how much easier it is to give advice than to follow it?

One of the things I say frequently is, "Life is like a roller coaster. It's a lot of fun as long as you remember to hold on through the corkscrews." Well, I've entered another small corkscrew. I was expecting a phone call last week from Dr. Ostrowski's nurse w/ a scheduled date for the surgery - likely at the end of December or early January. Well, I did get a call but it wasn't what I wanted to hear. Unfortunately, Dr. Ostrowski doesn't use all of the same procedure codes that Dr. Minor uses. I had submitted all of the codes from Dr. Minor to the insurance company and they only denied one. Well, they don't cover most of the codes that are used by Dr. Ostrowski. This doesn't mean they won't pay - it means we have to appeal, which takes about a month from the time Dr. Ostrowski submits his appeal. He can't submit the appeals letter yet because he hasn't received my records from Dr. Minor, who happens to be out of the office most of December. In short, we're looking at another 5 to 6 weeks before the surgery can even be scheduled.

My close friends have continually reminded me that God wouldn't bring me this far to let all of this fall. There's a reason the surgery is being delayed again. Sigh. Corkscrew. Hold on.

The Power of Friendship

Ever think about the strength that our friendships bring us? Well, last night I was reminded....

I have a close group of girlfriends that hang out with one another on a regular basis. We were all together last night for one of our "My Favorite Things" parties. (THANK YOU, Rhonda!!!) During these parties, we each bring 5 identical items of some of our favorite things (last night, I brought 5 each of a chopping knife, fuzzy socks, and a copy of my favorite poem - Elizabeth Barrett Browning's "How do I love thee, let me count the ways") and exchange them w/ friends. Any way, I was definitely a little concerned about the noise level because we're known to set off sound meters w/ our laughter, especially w/ some of the hair-raising stories we share (if our poor husbands only knew!). I took ear plugs and said a prayer. God is good. It is only through His power that I was able to stay for 2.5 hours and laugh the entire time. Yes, it was loud. Yes, I ended up w/ a pounding head and wobbly legs. But it was the best medicine I've taken in a long time.

Remember to cherish your friends!

The words to Elizabeth Barrett Browning's poem are below. Elizabeth Barrett was born into a wealthy family w/ a strict father who forbade his children from marrying. She suffered from a severe lung disease that ultimately confined her to her bedroom for 5 years. During that time, she exchanged letters w/ the then-famous poet Robert Browning and ultimately fell in love w/ him. Know what happened after they married? Elizabeth's health underwent an incredible turn-around! This demonstrates the power of friendship and love. The poem below was written when Elizabeth was falling in love w/ Robert:

How do I love thee? Let me count the ways.
I love thee to the depth and breadth and height
My soul can reach, when feeling out of sight
For the ends of Being and ideal Grace.
I love thee to the level of everyday's
Most quiet need, by sun and candle-light.
I love thee freely, as men strive for Right;
I love thee purely, as they turn from Praise.
I love thee with a passion put to use
In my old griefs, and with my childhood's faith.
I love thee with a love I seemed to lose
With my lost saints,
I love thee with the breath,
Smiles, tears, of all my life!
and, if God choose,I shall but love thee better after death.

Get real!

Today reminds me of the day I realized I was really having a baby (the 1st one). No, not the day that the pregnancy test was positive, but the day i had my first contraction and realized this was happening. No one had taught me how to be a parent - our parents can't even do that. I could organize a major event, keep track of a million project schedules, stand up to the most intimidating coworkers - but I wasn't ready for this. They were actually going to give me a baby and let me walk out of the hospital with her w/o a clue what I was doing. PURE FEAR!

Yep, that's today. Before today, my biggest concerns were: 1) having the surgery soon so the symptoms wouldn't get worse, 2) getting through holiday celebrations, 3) finding a way to play w/ my girls, 4) alleviating the extra pressure put on Mark, and 5) getting the insurance to pay for the surgery. It never dawned on me that I would be afraid of a stupid surgery. i wasn't afraid of child birth (taking the baby home, yes, but not the actual labor part), knee surgery, going to college, getting my first job, marrying Mark (maybe i should have been, lol). I just don't scare easily. At times, I don't even understand when other people are afraid. Not any more. I get it.

So, why do you suppose we even have an emotion like fear? Some people will say that it's an evolutionary emotion that helps us to survive. Sure, that's the easy answer. But, it's definitely something bigger than that. It forces us to rely on someone else to get us through because we're incapable of working through fear on our own. Fear forces us to surrender to God's strength and protection. We're much safer in His arms than out on our own. You may be smiling because I struggle to remember that I'm not in this alone. After all, "control" is my middle name. He is stronger and wiser than the rest of us and it is through fear that we some times learn to rely on that strength. I read in a Bible Study in June this year..."Sometimes we are not ready to see the wonder of God's wisdom and strength until we are gasping for breath in the exhaustion of our own strength." It's my prayer that I surrender to this rather than fight it. I'm in the middle of fight-mode right now, but hope that it passes soon so that I can be at peace. I pray the same for all of you - we're all fighting something. Lay it down.

Answered Prayer: Connect the Dots

Yesterday, I saw Dr. Ostrowski. It was a great answer to prayer. Follow the steps below to get to him.

1. 1992: I had always known that I wanted to work in international business, so I went to IU as a Business major.
2. 1992: After two months of classes, I suddenly changed my major to Audiology. Huh?
3. 1998: I was back at IU for my masters in Audiology and was able to choose between several great places for internships. I chose Midwest Ear Institute w/ Dr. Hicks.
4. 2008: You already read the post that after being diagnosed w/ SCD in Johns Hopkins and learning that only 150 people in the world have it, I found out that someone in Martinsville had recently had the surgery.
5. I met Biane (woman from Martinsville) who told me about Dr. Ostrowski in Indianapolis.
6. Yesterday: On the way to Dr. Ostrowski's office, I remembered that I did an intership at Midwest Ear Institute - the exact place we were headed. Wow.
7. While at Dr. Ostrowski's office, I ran into an audiologist who supervised my internship - she remembered me and we instantly hit it off.

I don't have any more questions as to whether or not I should go to Dr. Ostrowski. Do you?? :) Oh and by the way, I did still end up working in international business, despite the short detour. God is good.

Doctor Appointment

This afternoon, Mark and I will meet with Dr. Ostrowski from Midwest Ear Institute. He's performed 3 of these surgeries in the past and is also in my insurance network, on top of being in Indy instead of Baltimore. I'm not yet comfortable w/ being his #4 for obvious reasons, but I am going to keep an open mind and ask God to give me discernment as to whether or not to ask him to do this surgery. The appointment is at 3:30 today, so please say a lot of prayers that we'll know what to do next.

I found out today that Morgan told her teacher that she's worried about me. It was pretty hard to accept that my 6-year-old spit-fire daughter is worried. That's much harder than any of the poking and prodding I have to take from the doctors. She's a strong girl - she has strong faith, a ton of joy, and is as stubborn as her Mommy. So, I'm sure she'll make it through this just fine. Our hard heads are good for this kind of thing! :)

Great Start to the Week

I woke up this morning thinking that I need a big, giant kick in the pants! Yes, this whole thing stinks, but there's really not anything I can do to stop it. So, I need to inhale, exhale, and start sucking it up. I think I'm going to try something new - maybe an exercise that I would have said was for wusses a few months ago. I need to improve my balance and state of mind and if I continue to lounge around, I'm headed off the deep end. I can't really raise my blood pressure much or I'll end up on the floor, but I would love to get stronger and have better balance.

One big funny: When talking w/ Biane (who has SCD) the other day, she asked if I have word-finding or word-substitution problems. Stop laughing! Yes, all of my close friends know that I have a horrible time w/ sayings. Now I have a good excuse. She said that SCD can cause this because it forces the left half of the brain to go on overload in order to keep our bodies balanced. It also causes memory difficulty for the same reasons. Honestly, I don't buy it but it's a GREAT excuse that I'm keeping. Forever.

I've had a lot of nick names in my lifetime. Let's see.....what are they.......strike that, I'm not listing them here for fear they may be used against me. Anyway, it's my hope that I have a GREAT nick name coming out of this whole thing. Something intimidating - like scar. Speaking of scars, I saw Biane's scar Saturday and it's really not bad. Most of you will never really be able to see it because my hair will cover it. Well, I might be convinced to show you in order to prove how tough I am or in order to increase the intimidation factor.

Yep, today's a good day. Enjoy it!!!! Christmas is only 17 days away!!!!!

-sly

Simple Pleasures

Today brought a lot of good things: Church, football, cooking, and groceries. OK, so call me easy to please, but I was so excited that after church, cooking lunch, and football, I was able to go grocery shopping tonight. Sure, my Mom came w/ me to make sure I made it all the way through the store w/o crashing into a display of Miracle Whip (I actually did this once as a kid and left hundreds of jars of Miracle Whip all over the aisle), but I made it. Small pleasures.

To give it to you straight, church was tough. The music seemed ten times as loud as it usually is and things are to the point that I can't sing because it gets too loud in my noggin. Granted, it's probably a relief to those around me that I now spare them the experience. :) I think I'll try ear plugs next week.

Last night, we went to see our nephew at Chrysalis. We were in a smaller room w/ about 100 people and it was LOUD. Also, the mix of the sound and the visual of the ceiling fans somehow messed w/ my head and I ended up stumbling more than I have in the past. But after we prayed, Mark and I bundled up and went outside to get some cool air. That helped. Even though it was cold, it was actually a beautiful night. I'm usually a weinie when it's cold, but last night was perfect.

My niece said something last night that hit home. She said she was visiting Ball State and got lost on the way, ending up about 1.5 hours late. When she got there, she ran into an old friend. She said, "I know I was supposed to be late so that I could see her. God some times takes us the long way to get us where we need to be." Hmmm.....maybe this journey is my long way 'round. I look forward to what He has in store for me on the other side. Smiles.

Wasn't the snow beautiful this morning?? As many of you know, we live in the middle of no-where (actually, we live 30 miles south of no-where). There aren't any cars to disturb the snow, so it will remain beautiful long after the neighborhoods are a muddy, slushy mess. :)

Ly, Jamie, and Joey came over last night. It was a lot of fun. They brought our favorite pizza and the girls played in the basement and laughed all night. What a wonderful sound. I pooped out and headed to bed at about 8 but it was a great time. Thanks, guys!

I met Biane for the first time today (my new friend who recently had SCD surgery). She talked w/ me about some fairly scarey but real stuff that goes along w/ recovery. I'm not sure that it's what I wanted to hear today but probably what I needed to hear. Please keep praying. Thank you.

-sly

TGIF

Well, this has been an interesting week to say the least. I received some bad news yesterday and started to post a blog about it last night but decided to sleep on it. Things always look better in the morning, don't they? They do look better today.

As you've seen in the posts this week, the symptoms have been getting worse, so I was anxious to learn the surgery date. Yesterday, I found out that the earliest Dr. Minor can do the surgery is February 23rd. Ugg. That's hard to swallow. On top of that, he's no longer in our insurance network as of January 1st. My first response was to get on a plane and convince him to do the surgery last night. LOL. I can be very persistent - he might have said yes. But after talking to Mark, we've decided to work through his office to try to get an earlier date and also work with the insurance company to see what can be done. The surgery's not an option, so we will find a way. Please continue praying.

I made a big decision last night. I'm not going back to work at least until early January. The symptoms have gotten to a point that work has become a form of torture rather than something I love to do. With the help of my wonderful manager and friends at work who kicked me in the pants (thanks, Angie and Kathy!), I decided to work from home part time and use vacation time to supplement the hours. This will help me be able to work when I can and focus better.

A few answers to the inquiring minds who have asked questions:
1) I have super human hearing powers when sound travels through bone. In fact, Johns Hopkins had their audiometer callibrated to be 10 decibels quieter than standard equipment and I could hear as quiet as their machine went. wow. This is why the sound of taking steps on a hard floor makes it sound like a drum in my head. 2) Unfortunately, the titanium plates are not magnetic so will not set off airport equipment. Mark was hoping for magnets. He said we could attach an ornament to my head at Christmas and appear rather festive.3) I sound like a kazoo as in the instrument, not as in the character from the Flintstones. HOWEVER, I discovered this week than if I press my fingers as hard as I can to the side of my head, the sound goes away. Cool. Now I'll have carpal tunnal from abusing my wrists. Too funny.

:)
sly

Yesterday was a pretty good day. I felt GREAT for the first 4 or 5 hours of the day, the first time in over a week. But oddly, later in the day, I started having difficulty w/ my vision. Even moderate sounds around me started to cause me to not be able to see words on the computer monitor as I was typing them. Not fun.

I keep reminding myself that life is actually wonderful despite the goofiness that's happening. I have a good family, lots of loving friends, a good job. My work is going to let me be off up to 3 months at 100% pay and the surgery will be covered at 90%. That's wonderful.

Honestly, I'm starting to get a little lonely. Since the sound of my voice has become more uncomfortable, I'm just not my same old self - I don't jump into conversations or do my regular walk-throughs to say hi to everyone at work. And I know that it's probably difficult for friends to know quite how to approach me. None of us is used to me being quiet or reserved, right?? lol. Anyway, I know we'll figure this out together.

-sly

Today's a great day! I got a lot of rest last night and feel good.

Favorite new symptom:

• Eyes shake when I eat pretzles or chew ice. My Mom always wanted me to stop crunching ice - I guess she'll get her way. lol.

Today I'm thankful for:

• Friends: I have so many caring and thoughtful friends.

I found a new friend last night, someone with Superior Canal Dehiscence. It was such a relief to speak w/ someone who has gone through many of the same experiences. Her surgery was 3 months ago and she too went to Johns Hopkins and saw Dr. Minor. She was surgery #75 for SCD (i.e., Dizzy Blonde Syndrome). What are the odds that in all the world, #75 lives within 10 minutes of me???? God is good, all the time.

My new favorite symptom this week is kazoo-voice. When I talk at any decent volume, I hear my voice like a kazoo in my head. I'm trying to look at this one with humor. Really, who would believe that I can hear this stuff!!!!???? It's like I'm a bowl full of party tricks. lol.

I'm stumbling more often now, but incredibly, I keep missing furniture and other hard objects, and am getting really good at catching myself. (Don't tell anyone, but I'm also a natural klutz...I'll just use this as an excuse!)

DBS Chapter 2

The past week's been a tough one but also one filled with small and big miracles.

• Miracle #1: Since Superior Canal Dehiscence was first identified 15 years ago, only about 150 people have been diagnosed with it and of those people, only about 80 have undergone surgery. Last week, one of those individuals walked into Home Bank in Martinsville!!!! She received her surgery on September 1st of this year. She gave Melissa (my sister-in-love) her name and phone number and I'm going to call her tonight. Amazing!!!
• Miracle #2: All but one procedure is covered by my insurance at 90% of the cost, so that's good news.
• Miracle #3: My husband, my husband, my husband. He is my hero in the truest meaning of the word.

Tough parts:

• Crappy thing #1: The one procedure the insurance company doesn't want to cover is incredibly expensive and incredibly necessary. It's the difference of the surgeon having to shave my entire head versus only a 3 inch by 1 inch place. Guess if I were Michael Jordan or Mr. Clean, I'd be okay w/ that. We're appealing.
• Crappy thing #2: Holiday parties. I should enjoy them but it's hard when all of the jolliness (is that a word? i don't think so!) leaves me feeling like I'm in the middle of a drum being beat by an army of children.

That's 3 miracles and 2 crappy things. I'll take it for this week.

-sly

Dizzy Blonde Syndrome Chapter 1

Many of you received this letter from me via email. If I didn't send it to you, I apologize....

Hello my friends,

I apologize for the mass email but I have a lot of information to share with many people, so felt this was the most efficient way.

Mark and I have spent the past few days in Baltimore, visiting Johns Hopkins Hospital for some tests. I wanted to update you about what we found. Bottom line….I’m going to be just fine. J

For many years (10 to 15), I have dealt with symptoms of vertigo or dizziness (yes, you can call me a dizzy blonde), but have felt it was too mild to be anything but a minor nuisance. It hasn’t been standard vertigo – in which a person feels motion sick – it’s more a loss of ability to know quite where my feet are (as if the floor was pulled out from under me) during loud noises or during strenuous activity. This has come with some other annoyances – occasional migraines and the ability to hear a lot of internal body “noise” such as my heartbeat, eye blinks, and neck movements to name a few, as well as hyperacusis (super human hearing powers, causing sensitivity to sounds). Again, it’s something I’ve learned to deal with over the years. However, the past three years have brought me to a point that I’ve had to make a lot of lifestyle changes. I’ve begun avoiding and/or fearing loud environments (such as my beloved Colts games), swimming (being under water), strenuous exercise (like Lilly bootcamp), and overly quiet situations (because of what I hear internally). I seemed to have changed so many things that my symptoms were for the most part controllable. However, a few months ago, I was driving with the girls in the car on a beautiful day with our windows down. An ambulance passed and the loud siren caused me to become disoriented and I swerved into the lane next to us, luckily an empty lane. This prompted me to stop denying things and start investigating (with a lot of accompanying prayer).

Because of my background in audiology, I knew what this was not. It wasn’t any of the standard conditions of vertigo I had observed in patients or studied. I also understood that vertigo is incredibly complicated and that individuals with the symptoms can go undiagnosed or misdiagnosed for years. Therefore, I went on an independent investigation. I came across a condition known as Superior Canal Dehiscence (SCD). SCD is a condition or syndrome in which patients experience severe vertigo in response to loud noises, vertigo in response to high pressure (e.g., when under water or during exertion), and an ability to hear internal movements or noises (e.g., heartbeat, eye blinks). SCD was discovered in 1995 by Dr. Lloyd Minor of Johns Hopkins University and has been diagnosed in approximately 150 patients, 80 of whom have undergone surgery. I decided to email Dr. Minor in early October, and one day later he responded. After emails and phone conversations, we decided the best course of action was for me to come out to Johns Hopkins in Baltimore, where Mark and I have been the past three days.

Tests consisted of a CT-scan, audiological tests, balance tests, physical exam, eye-movement tests, and several other procedures to examine my Dizzy-Blonde-Syndrome. At one point, the doctors strapped me up w/ frenel lenses – they magnify your eyes so the docs can see movement – but then end up making you look like the animals on the greeting cards w/ the big eyes. Mark and the doctor were laughing so hard at the sight of me that I thought Mark was going to fall out of his chair. Then, the doctor told mark, “Just wait until I put on the headphones.” He placed industrial-sized headphones on my big-eyed head, with bright red and blue ear covers. He and Mark howled. I didn’t find it very humorous! About 6 hours into testing, I found myself in a room with a seasoned audiologist. I had electrodes on my head and neck and wore headphones. As I looked straight ahead, she pelted me with loud tones, measuring my responses and helping me keep from falling out of the chair. After about 20 minutes, she looked at me and said, “This next one will tell us.” I said, “Tell us what?” She said, “Tell us if you have Superior Canal Dehiscence.” Then after the tone, she said, “Oh my. You have it. You have it! I know this is strange, be we so rarely see a patient with true SCD that I’m really excited. You have it.” I started to cry. I’m not sure that it was out of sadness. I think it was relief – relief that there really is a reason for what I’ve experienced as long as I can remember – relief that I didn’t have to walk out of the hospital the way we’ve all experienced in the past, with more questions than answers – relief that I could stop looking.

All of the test results – most importantly, the CT-scan – confirmed that I have very little bone covering my balance system. Simply, this causes the symptoms I’ve described because I hear and feel sound from within my body because there is no bone keeping it out of my semi-circular canals or balance system. There are really only two courses of action with SCD: 1) learn to make lifestyle changes and cope with the symptoms, or 2) have intracranial surgery. That’s right, crack my noggin to fix what’s inside. Dr. Minor told me the decision is totally mine. He has patients who’ve decided to live with it and he has the same number of patients who have opted for the surgery. The surgery is as invasive as it sounds. They shave a 1 inch by 3 inch patch of hair near my ear, then pull back soft tissue, cut and lift a section of the skull, take a muscle graft that is mixed with cement, place the graft cement where bone should be, plug one of the semicircular canals, then replace the skull section and patch it with small titanium plates. The good news is that they no longer shave the entire head because there are more precise tests to show them where to cut! This is fantastic news because I resisted the thought of going bald! GI Jane was sexy, but how many of us can really pull that off? J

If you’d have asked me two days ago, I would have told you there was no way in hell I was going to do this. However, prayer is a powerful thing. A lot of people were praying for me – that I would get a correct diagnosis and that Mark and I would make the right decision. While at the hospital, I had to answer a lot of questions and in answering the questions I realized how much I had limited my life and to what great efforts I was going to make sure no one knows that something is wrong with me. You know me well enough to know that I’m stubborn, prideful, and want to be strong in every situation. That has been a great strength and great weakness. Answering questions made me face what I had pushed aside. I can’t let my girls grow up with their Mommy continually avoiding things that will make me dizzy. I can’t limit my own experiences because of this. God is good – He knew that I could only come to this decision if I had to answer all of the uncomfortable questions. Test results alone wouldn’t have done it.

We’ve decided that it would be best to do this in January. It will require me to be off of work for six weeks and will require us to stay in Baltimore about 9 days. I’ll be in the hospital for 3 days, and will have stitches removed on the 7th day post surgery. During that time, I’ll undergo a lot of physical therapy because I’ll need to learn to develop my balance after having one of the 3 semicircular canals plugged. There are risks to the surgery, but I have peace that God will protect me through this, so there’s no need to list those here. The doctor said that I will be on restrictions for the first month – unable to lift anything remotely heavy – but that I will be better within 6 weeks. The surgery is incredibly successful. The symptoms I have now should be totally gone after the surgery! J

Please pray. Pray for the girls – that they understand what is happening. We’ve had many friends over the past few years pass away due to serious illnesses. They need to understand that this is NOT like that – it’s merely a lack of bone that can be corrected with surgery. Pray for Mark. He’s been amazing through all of this. He knows me like no one else – and has been the only one to see a lot of the symptoms. He knows the struggles and he has encouraged me all along the way. Pray that his energy level remains and that he’s able to tough it out during the six weeks that I’m recovering. Pray for my family who I know will be there for Mark, the girls, and me. Pray for the doctors – they are amazing doctors, some of the best in the world, but they still need to keep it up! Pray for the insurance company. This isn’t an inexpensive operation and Mark and I will have to pay some of it, along with financing the trips to and from Baltimore – we need the insurance company to take care of their part. Lastly, pray for me. Because you know me well, you know that I struggle to let other people help me or take care of me. I’ve got to get over it. Pray that I will be able to step away from work and other responsibilities and let everyone else take over. And pray that when I can’t, someone will kick me in the back side and remind me.

We will know more in a few weeks, after the schedules have been aligned, and after the insurance company has done their thing. At that point, I’ll send you info about dates.

Thank you for your love and friendship.

In His Strength,
Stacey

*If you’re interested in reading more about SCD, here are a couple of links:

http://en.wikipedia.org/wiki/Superior_canal_dehiscence

http://www.scdssupport.org/links.htm