Thursday, July 31, 2014

Baker's Dozen

Here's the deal...They say trouble comes in 3's right?

Well, this family...trouble comes in a Baker's Dozen!  Arghhhh...It's really starting to feel embarrassing, ridiculous and crazy really.  Just crazy.  Stranger than fiction...

Where to start...

I went for my 4 week post surgery today.  4 weeks and this dang ear is still weeping, and bleeding.  4 silly weeks and it's still not better! I'm so over this.  Two more weeks and I go back to see if it's any better.  My hearing is greatly improved.  The hearing test showed a 40 decibel gain from surgery!  The doctor said a successful surgery is 15 decibels.  So, I guess that was good.  I blame myself for the slow recovery.  I pushed it and did too many things I wasn't suppose to do.  But, what else is a single mother suppose to do? I had to work, I couldn't afford to lose my jobs.

Speaking of losing jobs...I got laid off from two jobs, 24 hours apart!! No, I did not see this coming.  Two weeks ago, both employers told me what a 'Fantastic' job I was doing.  These jobs were two of my main jobs.  It amounts to a $1600 loss of income.  That's big.

Shelbie is getting a bad cold.  She is suppose to sing tomorrow night at a big Make A Wish Event.  Of course, because of our Seattle trip and the doctor not getting the IVIG approved in time, she is behind her transfusion schedule.  I'm not sure when it will happen but it's not going to happen this week.  I just hope she will be able to sing.

I'm not going to cover all 13 line items of trouble because it's not worth my fingers typing it.

Tonight, I'm just trying not to get mad at everything and everyone. I'm trying to understand what in the world God is doing with my life!  I just don't get it!  If I'm suppose to be learning something, then perhaps, it's time he realized I'm just not getting the message...maybe an email would be better, or a text message instead of trial after trial.

I'm really hoping that losing these jobs means a better one is waiting around the corner.   I hope it all makes sense soon enough.  I'm pretty much sick of it all.



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Tuesday, July 29, 2014

Post Seattle

We arrived home safe and sound late Sunday night.  Now, it's back to the grind!
Shelbie, me and Sam

Shelbie, dad, Sam and mom!  It was nice having them come with us! 

I'm not sure who these people are! 


Here's the update from Seattle.

Basically...I'm a big disappointment.  I should have been better prepared and Dr. S was surprised that I haven't done any reading, any researching...nothing on Dykeratosis Congenita.  It's not like me and I really need to get educated because knowledge is power.

Sam had a really good check up.  We need to get him to a Pulmonologist pretty soon to get some baseline measurements on his lung function.  She is mostly worried about that right now.  She told Sam that when he decides what he wants to do with his life as far as work goes, he needs to pass it by her.  She said under no circumstances was he allowed to be a chemist.  I'm pretty sure that isn't going to be a problem!  Any chemical exposure can be deadly to his lungs.  She even warned about being in smoky rooms, around smokers, even bonfires.  It's not that we have to be paranoid or anything but mindful.  Sam was super excited when she said even cleaning chemicals are bad for him so being a janitor wouldn't be the best option either!  I have to be careful with aerosols like Lysol, Air Fresheners, hairspray etc. His lungs are very fragile.

(This is funny because Sam comes cleaning with me a lot!   He thinks he's getting out of a job! Sneaky kid!)

His eyes are also showing signs of the disease with scar tissue starting to build up.  There is no treatment and no cure for this.  We will check in with our Ophthalmologist to see if we can slow this down.

Other than that, she thinks he will do well for another couple of years and doesn't expect to see too many problems with him as long as we keep doing what we're doing!  He has hardly been sick this year which is awesome!  His bone marrow biopsy will be soon and as long as his blasts aren't increased, (meaning that leukemia is lurking closer) and his cellularity is stable and no funky cells show up, he will be good to wait another year.

Shelbie continues to stump the medical community but it felt so good to be listened to, validated, taught and exchange ideas without feeling worried of the fallout!  She has made a new connection with a doctor that is both an immunologist and a rheumatologist.  She is wondering if we need to broaden our view with Shelbie.

 For her whole life, we have focused mainly on her bone marrow failure.  Dr. S recently diagnosed a girl with a very similar set of symptoms with a new genetic disease.  We will look there and see if anything comes of it.  She is wondering if we can find the underlying problems, then maybe, the bone marrow problems can be resolved.

Dr. S is worried about the bleeding and petechiae problems despite having a platelet count above 100.  It means that there is either a clotting issue or platelet functioning issue or some other underlying factor so that is why we continue to look and research and find answers. Her platelets are slowly dropping and it's just a matter of time before we end up in the same ugly place we were three years ago with a platelet count of 1...then it's more chemo.

The bad news is...the badder news is...( I know...that's not a word...)

Shelbie will be 22 in two weeks.  Seattle Children's only sees children up to age 22 so we have to move on from Dr. Shimamura.  The new doctor we will be heading back to, works out of Seattle Children's and University of Washington.  They are good friends and she assured us that she will not lose contact with us and will continue to be on Shelbie's team to advise where she can.  She will also help us transition to a new Adult Hematologist at University of Washington.  Again, a close colleague of hers.

I feel confident in these changes for the most part.  I am glad that Sam and Spencer will be able to continue to see her for a few more years.  Since being home, I feel a lot more confident actually, that God is in these details and we are being directed to the next best thing for Shelbie.

We have a couple more trips to Seattle this year and one to Boise.  I am hoping to find a Pulmonologist close to home but we will just have to see.  I didn't mind the doctor Spencer saw last year in Boise but all these medical trips are really expensive.

We were able to have a little break while in Seattle.  We hopped onto a couple of nice beaches before heading home and of course hit up my favorite french bakery down at Pike Place Market.

I also got to meet a blogger friend who is undergoing treatment at UW.  She is amazing and awesome and it was the highlight of the trip to be able to meet her and her husband in person. It's amazing to me how the internet connects us.  When I walked in her room, I almost burst into tears!  I felt so much emotion but instead, I was just awkward and dumb.  I'm so proud of the way she fights, her faith but most of all, her ability to be honest about her battles!  I love that!

Since being home, I have been extra grateful that despite how sick they are on the inside...they look great and face each day with courage and happiness!  I love that too!

 We stopped at my parents on the way home and hung out at two more beaches!!  That was nice to sit and do absolutely nothing!

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Thursday, July 24, 2014

Overwhelm

Today was our big day at Seattle Children's.  It has been emotional and overwhelming.  I have felt overwhelmed many times and I always knew we would make it through and the moment would pass.

Today, I'm uncertain that we will ever recover from all of this.  It's just been so hard for so long without a break and there seems to be no end to the difficulties.

Just being in that hospital is enough to make you sick.  To me, it's the saddest place on earth.  There are so many sick children, very sick children.  It breaks my heart to see them.  It breaks my heart to see their parents.  We all wander around poised and pulled together, like we know what we're doing, trying to convince the world, each other that we have everything under control but I had to wonder, if like a duck, we were all just paddling our little hearts out just to stay afloat, make it through the day- no, make it through one hour.  Just one more hour!

Tonight, we wandered down around Pike Place Market and the Waterfront.  The pier is full of all sorts of homeless people.  Out of the blue, Shelbie had a total meltdown.  The kind where you can't stop crying but in between the choking tears erupt bursts of laughter yet nothing's funny.  It's just that literally everything came pouring out in whatever form it could take with it.  It was so sad to see her fall apart.  Almost in a terrifying way. It was as if the reality of her situation collided squarely into her dreams wrapped in denial.  It wasn't fair.  For a moment, none of this seemed fair.

But...it is.  The trials of life are more fair than we think. We have our little bundles of adversity and you have yours. None of it's fun but it's all necessary.

Even I had a moment close to Shelbie's.  I felt myself feeling jealous of the homeless people I saw.  If you don't like depressing thoughts then don't read on.

There was a man on a corner playing a tiny piano.  He was incredible, awesome.  I stood and listened for a minute, then noticed that every single one of his fingers were bandaged up.  I assumed from day in and day out of playing the piano to make a meager living.  His playing was beautiful and contrasted sharply to his shabby appearance and wandering voice.  In a fleeting moment, I saw me in him.  I wondered how he got to this place; a man so obviously talented.  I asked Sam and Shelbie what they thought happened to him.  They both said basically the same thing..."I don't think he's crazy.  I think he looks like a man who had to be strong for too long. He just walked away from his life."

I think she was right.
I was jealous of him.
Sam was jealous of him.  Even he said..'.I wish I could do that.'

It was odd to stand there, all feeling the same thing, afraid to admit that we could easily be the crazy man on the corner...the guy who just walked away from his life.  It was kind of big.   And then we walked on to the cheese store...I guess because that's what normal people do.  They buy cheese.  They throw dollars and coins into open cases and cans.  They buy stuff to fill in the cracks, dull the pain, hide the sorrow. Today we tried to be normal...but we're not and I'm just not sure how to keep up with it all.  

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Saturday, July 19, 2014

Playing it by ear

Sometimes, the stupidity I display from time to time is quite amazing. I have this awesome knack for being stubborn and independent which is really a great combination at times but probably my nemesis this time. I really shouldn't have driven to Jackson or cleaned up the basement mess, lifting wet towels, blah, blah, blah because the last few days, the vertigo and pain has been increased.

Next week, we have our appointments scheduled for Seattle.  I am busy getting people lined up to hang out here with Bentley, substitute for my church callings and make arrangements for my office cleaning jobs.  I also have to gather all of Shelbie's medical records from every doctor for the past year to take with us.

The more I think about what has happened with our doctor here, the more angry I get so I'm just trying to 'zen' my way out of it.  I hate feeling anger and contention.  I just want everything to peaceful and calm.

Sam is pretty worried about the drive to Seattle.  He hasn't had any experience driving on the highway or long distance.  I believe he's been praying pretty hard that I will be able to do the driving to Seattle. We are doing it in one day instead of our usual two day trip.  It will work out.  I'm pretty sure I will be able to drive at least some of the time and Shelbie might be able to help out too.  We are going to stop in Coeur D Alene to pick up my parents and spend a couple of days with them in Seattle.  As usual, this will be our summer vacation!  I hate that vacation always consists of doctors and hospitals but until things are financially more secure, that's the way it goes.




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Friday, July 18, 2014

Hedgehogs and other happenings

We have a new addition to our family.  Mr. Winston Charles, is his official name and he is a Hedgehog.


Admittedly, I was less than excited about his arrival but I didn't exactly have a say in the matter.  Now that he's here, I don't mind him.  He has a really cute personality and seems like a much cleaner creature than the hamsters, chickens and ducks we've had in the past.  Our dog Bentley isn't exactly on board with this idea but he'll come around.

Shelbie has a lot of fun with him and loves taking him for walks at the park.  She is even training him to ride the skateboard.

I was really happy to find out that I got the Jackson Hole job.  My client is from Texas and is a really great guy.  I think I will enjoy working with him.  This is my first log cabin design. His home is at the base of the Teton Mountain range and I will be drawing an addition to the existing home.

I was also hired this week by the Star Valley Medical Center to assist them in their labor and delivery remodel and future redesigns.   I will be partnering with JRW & Associates as the Architect on the project. Healthcare design is by far the love of my life!

So, we are ending the week on a high note...  I have a lot to do!
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Wednesday, July 16, 2014

Perspective

Shelbie and I trying to get out of our street

The end of our street


Last night, the 15th of July, we had a flash flood in our big little town.  It was scary!  It wasn't your usual downpour of rain, there were high winds and hail the size of quarters.  Sam and I were at Walmart when it started around 5pm.  By the time we left the store, about a 1/2 hour later it was so bad we could hardly see the street.   The sky showed signs of clearing and so I really just assumed this would be a short lived event.

It has been a pretty hard week and weekend around here and yesterday, I was just plain stupid!  I drove myself to Jackson Hole for a job interview.  Shelbie was sick, Sam had commitments and I didn't want to miss out on a job.  I figured if I didn't take any of my medication, I would be okay but I wasn't.  It was tough to drive as a dizzy person and then to go up and down the pass was like someone stabbing my ear with with a knife!  I hadn't even considered that part!

Being the wise woman I am, I wore high heels and a dress to the job interview that was on the property of a home in some stage of remodel.  I wasn't sure how much had been torn up but I thought, if I wear high heels to a construction site, they won't notice my vertigo because they would just think I was walking carefully because I was in a high heels on a construction site...see how smart I am?  It worked!  But by the time I was done walking around and up and down...I was not well.  Then I had to drive home.

By the time I got home, my head was pounding, spinning and felt like I was going to pass right out!

So, getting home from the store in the rain, I had a thought to check the windows in the basement...they always leak. Sam left to try to get to his Dad's house to pick up things for a party he was going to.  He barely made it there.  The water on the road was now up over the bottom of his door.  His muffler was groaning and water logged and he kept texting me to tell me he was having a hard time getting there so I got distracted.  When I finished with him and he had arrived safely, I got to the windows.

Water was pouring in from the tops of the windows...not filling up the window wells like normal basement flooding.  I ran upstairs and grabbed every single towel in the house and stumbled back down to the basement.  I got that under control then noticed that water was laying on the basement floor where there aren't even any windows!!!  Water was pouring down the wall, between the studs and leaking out under the drywall.  I had about an 1" of so of standing water a ways out into the family room.

I was so frustrated!!!!  I posted a mean and angry post on Facebook, not really knowing the scope of what was happening in the city elsewhere.  I didn't hear the emergency alert on my phone.  I was tired and done for!   Water in my basement just wasn't something I needed to deal with.

Now, I'm embarrassed because I later realized that this was truly a disaster.  A city wide disaster and what happened to my house was nothing compared to friends, even my neighbors house!  So many people had 5' or more of water in their homes!  The oddest thing was that areas just one mile from our city limits didn't even get a drop of rain!! It was literally a black, disastrous cloud that blanketed our town.

It was two am before Sam got home and we had everything under control.  I was so tired and in so much pain.

It's been so interesting to me to see all the pictures coming on the social media feeds.  It's been even more interesting to read the comments.  Some people have said that God must have really been angry with our little town to cause so many problems.   I've heard that a lot.

I've been thinking of that...my perspective is that this was the Perfect Storm!  It was perfect in so many ways!  It was perfect because I don't think a soul in this town can ever doubt again that God is in His Heaven and He is here on Earth.  I don't think a soul in this town can deny the miracles that happened all over!  I don't think a soul in this town can say that no one cared about them.

The thing I loved the most was that without one second thought, Sam abandoned his party plans (which still went on by the way) and just jumped right in to help a neighbor who had 5' of water in their basement!  Beds were floating, most everything was ruined.  While he was there, we witnessed miracle upon miracle.  People just kept showing up to help, Dominoes Pizza took food over for free but he saw them bring a bin of pictures from deep waters, opened the lid to find everything completely dry and preserved.  It was perfect!

I looked at all the service that was given to me, to my neighborhood, to strangers... and it was perfect!  It is exactly what this town needed to wake up to!  Sometimes, I think we wander around half asleep, not noticing anything but our own little problems.  I know I do.  I have.

I don't think God hated anyone.  I do believe that perhaps, it was His way of gathering His people; to bring us back to one heart and one mind.  It was perfect...that's my perspective.

Not only that, we have been dealing with so much sickness and other really hard things that ultimately, I really didn't care about the basement and in fact, I was sorry the whole thing wasn't washed away!  I have felt smothered by this world, the stuff, the everything...I wouldn't have missed one single thing had we been faced with more water than we were.  Someone said to me, "Why don't you care that your sheet rock is wet and water is running down behind your wall?  You don't even sound bothered?"

I guess because, from where I stand...The only thing that really matters is my kids.  As long as they are safe and with me, then everything else is just stuff, useless, pointless, a clutter to my life, then who cares?  I just don't care.

So, I've learned that perspective is everything and this was the perfect storm and God is gathering His people...and that is love.  God is love!

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Saturday, July 12, 2014

Fragile

I have been thinking a lot about how fragile life is.  I'm not really talking about the life and death of stuff, I'm talking life is just so full of fragile things.

Fragile parts and pieces.  I had the smallest bones in the human body removed and replaced with prosthetic and pistons to make them move. You can not even see a scar...a few stitches that remain in my ear canal but to anyone passing by...they would never know.  Even to know, you would be searching for signs of something so monumental and wouldn't find them.  This has been small but a huge feat of medical science and then I complain that I have to live in a fragile state for a few weeks til these little things become strong and part of me.

I have had a host of experiences this week to remind me just how fragile the parts and pieces of our day can be.

Fragile words.  A word no matter how small, when used in a less than fragile context, can cause the biggest amount of harm and damage.

Fragile thoughts.  A moment can change on one little thought that seems so benign and even thoughtless but creeps in like a cancer to change the whole course of a life...a fragile life.

Fragile worth.  A person's worth can be obliterated in one single, fragile, hapless, selfish act.

Fragile actions.  One little, tiny act- completed or put off can make or break the existence of someone's day...from...I can't do this for one more second...to...maybe one more second.

Fragile hearts.  Hearts that can so easily become hardened, broken, sad because we left them with the wrong people, had fragile expectations that someone else would care.  Hearts that can remain soft, loving and open are fragile and can only be saved by love...love for yourself, love from another.

Life is fragile.  People are fragile.  We walk around with our strong faces and squared shoulders.  We busy ourselves with our own busyness that is really just meaningless disguised in distracting threads of importance.

We work and work and work...we MAKE time...rushed time for anything other than work...for our fragile selves, our fragile kids...our fragile relationships...With God...we only make what time is left for God. Is there ever really enough time for God...for family...Time is fragile...in a state of delicate balance.

This week, I am humbled to feel fragile.

This week...I have thought about what I really want and I really don't know...they are fragile, fleeting thoughts, ideas.

I know that I am not happy.  I know that keeping up a strong facade...working a million jobs to keep from being trampled in this rat race world is not making me happy, it's breaking me.  Something has to change but the ecosystem of my life is so fragile...so fragile and frightening.

I know that with small, even feeble changes...strong, less fragile things can emerge.  Someday, my new 'bones' will be strong and be a part of me...I hope that I can find the will and wisdom to know what I want, take hold and become a part of a stronger me...less fragile.




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Thursday, July 10, 2014

Play it by ear...

So, never a dull moment!

Went to the doc to get my stitches out and I thought the packing would come out too but I guess not.  The stitches came out though.  He said it looks good, all things considered but it's slow going!!  He was surprised at how dizzy I still am and still feel like total crap-o-la!

I thought I was doing myself a favor by getting off the pain meds and Valium so early.  I just felt like I could manage the pain without anything and dizzy is one thing but feeling groggy and foggy and still sort of dizzy is another and that is what the Valium did for me so more than anything, it just felt like a tactic to keep a busy lady down!   I guess I was wrong...it really does help remedy vertigo.  So...he kindly asked me to go back on it for a couple more weeks!  COUPLE MORE WEEKS!!   NOOOOOOOO!!!!  Aside from this little glitch...it's not really a glitch...I have to remember that there are new bones trying to fuse to a new piece of titanium or something like that and pistons...and all sorts of bionic things and my ear drum isn't even where its suppose to be (which is normal after this surgery) but it's all looking good!  By the way...For the record, I really like Dr. McMaster, Dr. Peterson and all of their staff!  They have been so kind!  Dr. McMaster did the surgery!

It took everything...EVERYTHING I had not to cry!!  Two more weeks of feeling so crappy.  I'm just not use to this and I hate the panic of not being able to work all my jobs and keep up the house.  I hate relying on my kids or other people.  I just barely got back on my feet from years of struggling.

For two weeks...no more...
Driving
Bending
Lifting
Blowing my nose
Sneezing
Coughing
Pressure of any kind on my head

Ugh...Not only that.  I feel so bad for my kids.  Sam especially has been bending over backwards to help me clean the offices at night.  I pretty much just dust and clean sinks but he has to do the the heavy, hard stuff!   I know he would rather be with friends, I would rather him be with friends but he does it without complaint!  I have never heard him complain!!!  I am so grateful to him.  He also drives me everywhere I need to go and even rides on my lap on the motorized scooter at Walmart because I can't see straight to steer.  He has been a good sport but I think he's getting tired of it.  I'm getting tired of this!

On top of it all...The problems with Shelbie continue.  The petechiae and purpura and symptoms of H-Pylori that no one seems to address.  I have had this fall out with our local doc and I don't know where to turn.  Our family doc will just send us to the Oncologist and therein lies the problem.  His last words were, "See ya next year!"

I didn't want to do it, but I sent our sweet doctor in Seattle an email just asking what I should do about the whole situation.  I didn't bash on our doctor here, just gave facts that I felt were contradicting and not in Shelbie's best interest.  Petechiae and Purpura are problems, big problems whether it is due to platelet destruction, platelet manufacturing or some other problem...bleeding is bleeding and not normal.

She confirmed that this needs to be addressed as soon as possible and Shelbie needs to be followed closely! She asked me to bring her out as soon as I can...not August when I had thought.   Amen!!!

That means...a quick trip to Seattle...but I can't drive, I can't think straight, I am not bringing in a good paycheck to pay for a trip...over thinking, over thinking...anxiety...anxiety...where's that Valium???!!!

Tonight...I'm trying to stay calm- sans drugs.  I'm trying to think that all of this is for our good.  I can't clean the homes anyways and have cancelled those for the month so maybe it's better we make the trip while I'm down.  Maybe by the time we get the appointment finalized, I will at least be able to drive most of the way. I have to leave this in God's hands.  I will leave this in God's hands...Somehow...like all the other times, it will be okay. I'm really hoping that my employers will be understanding, at least when it comes to the offices I am still trying to clean at night.

Ohh gosh.  It feels sort of like a mess.  I haven't even scratched the surface of the stuff going on around here but this has been enough for one day!

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Wednesday, July 9, 2014

Confessions from Kat

What's the point to a blog if you can't complain right?

Right?

I am not having a good day!  Why can't I just feel better?  Good grief!  I did not sign up for this!  I signed up for the 'get your ear fixed in 24 hours take a little nap over the weekend and get back to life plan'.  That's it!

This morning, I can't see.  I mean, I can see, I'm not blind but everything is blurry, with my glasses on, without my glasses on.  I have cleaned my glasses 50 times and I can not get my eyes to focus!  What now? Why does my body hate me?  I'm so mad.

I am missing so much work and that means an abundance of anxiety!

Shelbie keeps reminding me that she is losing weight faster than normal, she has more petechiae and purpura and bruising and has lost her appetite and all she can do is sleep all day...We laugh a collective, nervous laugh but I need to get her to a doctor who will actually do something helpful but that just isn't going to happen this week and probably not next either since I can't even drive!

Today, is just a day of frustration.  I just want to be out of pain and I want to see straight and not be dizzy anymore!  Who knew the tiniest bone in your body could cause so much grief? People say...you just have to rest...it takes time for new bones to fuse together!  Yes People...it does!!!! But why can't it happen faster??!!

Ahh....the joys of being annoying!

Here's the biggest confession though... and the thing that angers me the very most!!! (Maybe not the most but today for sure!!!)

I consider myself to be an easy going person.  I really do.  I pretty much just go with it...(when it doesn't involve me being sick)  I think I know what I want but when I get what I want, I realize, it's not what I wanted at all!  Restless...I'm just so restless and if I could change one thing about me...that's what I would change!

Here, all I wanted was a nap.  A break.  To forget all the problems we have and just sleep for 8 straight hours without a care in the world.  

Well, surgery brought me day after day of napping!  Not just napping but napping on mind numbing drugs!  I should be about as happy as a rat on a Cheeto!!!  Right?  RIGHT?  Nope.  Not happy.

I have always said I hated cleaning and couldn't wait until I never had to clean again.  Well...I haven't had to clean this week, or next, doctor's orders; I should be about as happy as a tornado in a trailer park! Right?

 Nope...now I'm stressing about what I would possibly do just drafting at a desk at home all day long!

I was so swamped with work before surgery, working 60 hours a week and I just wanted things to slow down.  Well, they've slowed down.  Waayyyy down!  I should be about as happy as a pup with two tails! Right?

Nope...now I'm stressing that I don't have enough work.  I don't have enough money to dig out of this mountain of debt!  

Okay...well, there you have it.  True confessions of a crazy lady!  I need therapy and a lot of it!  I probably need a white jacket with shiny silver buckles and super long sleeves...but then again...that wouldn't make me happy either...I'd just chew through the leather and what's the point to that?


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Tuesday, July 8, 2014

I've Fallen...

Though I can look back on this and laugh now...It wasn't funny this morning.

One would think that with each passing day from surgery, I would feel better.  This morning, I woke up early because I had a doctor's appointment.  I sat up and things seemed okay.  The second my feet hit the floor, I was spinning like crazy!  I have never experienced the kind of dizzy I experienced this morning!

Along with the dizzy came the overwhelming feeling to vomit!  I started to dash toward the bathroom but that was a no go!  I fell to the floor and on all fours, clung to carpet fibers for dear life.  I was on one wild ride.  I swear my entire house was spinning so fast is was going to projectile itself all the way to China!

I started screaming and crying for help.  Shelbie was at the gym and Sam was downstairs sleeping.  He didn't hear me.  My phone had dropped beside me so I dialed his number, knowing he charges his phone beside his bed.  Sure enough, he answered in a very sleep voice.

"Sam, I need you!!! Hurry!! I'm upstairs!" I was crying and blubbering
"Okay, who is this? Where are you?" Said his sleepy voice
"It's MOM!!! Please hurry!! I'm upstairs!" At this frantic point, I decide to give up and just go towards the light cause I was pretty sure I was dead or dying and stuck in some vortex that was carrying me to Heaven!
"I'm coming." I heard him say as the phone dropped to my side.

Just knowing someone would be with me when I died was reassuring and I just continued my sweaty grasp to the very ends of the carpet fibers.  Sam didn't come. He didn't come! I kept crying and yelling for him to come!

I grabbed my phone and in that chaotic moment...realized...I dialed the wrong number!  THE WRONG NUMBER!!!

I dialed the right number, scared the daylights out of Sam with my screaming but he arrived at my side with Zofran and a bucket!  When I say I have never felt that before, I mean it!  The room didn't stop spinning even when I closed my eyes!  That was the worse!

Eventually, things settled down a little.  Everytime, I think of that poor kid I accidentally dialed and screamed at, I chuckle...just a little...Okay, I down right laugh my head off. Well, not really, I'm not suppose to move my head but it's so darn funny!  Oh my gosh!  I have wondered all day what that kid thought.

Wouldn't it be funny to just keep calling him from different numbers and yell, "Sam!! I need you!!"  That's hilarious! ...no not really, that would be mean.  That's what I meant to say!

Oh gosh...Today was the hardest day in recovery to date!  I hope nothing slipped or is leaking cause that would mean more surgery!

I slept the better part of the day and this afternoon, I got up and said, "Kids, I'm going to get my act together and make us something really healthy and good for dinner."  I was thinking some grilled teriyaki chicken, baked potatoes, grilled veggies...As I'm being carried away with dreams of roasted broccoli, Sam says, "Oh, I'm so glad!!! So, does that mean we get Mac n Cheese?"

Huh?! ....being the wise mom that I am...

"Yes.  Why yes, that is exactly what it means!  Mac n Cheese for dinner!"

Bless this child!  All he wanted was a box of a Kraft dinner!  I am so lucky, so blessed...truly, God does know how to give good gifts!  He gave me super, easy going children! I'm not being sarcastic here!  I just needed something easy!

I don't excel at being down and out.  It's not my forte to sit around let alone sleep all day!  Usually, when they say recovery is a few days, it really means 2 or 3 and then I'm fine...this one...Nope, they say 3-6 weeks and I'm pretty sure they mean it.  I had a friend come over at noon and she knows exactly how much being down sucks so I was more than happy to commiserate with her!


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Monday, July 7, 2014

For the birds

Recovery is for the birds and everyone else but me.  I pretty much think I should be exempt from recovery.

Why can't you just get parts and pieces replaced and move on like a car when you get the tires replaced?  It doesn't need time to 'recover'.  It doesn't fall over in the tire store parking lot waiting until it feels better to roll on!

This surgery surprised me some, because I thought every day would be better than the day before but it seems to be a little worse, or at least different.  Definitely not out of pain mode but today, I am going to try to get by without any meds, I hate the floating, foggy feeling. So far, I might last another 10 minutes!

I hate this hung over, droopy feeling! ( I guess I just mentioned that didn't I?)  Even though I can't clean, I should be drafting and marketing but I can see that will have to happen in short spurts of time since my eyes seem worse than ever!  What is that all about?  Fix one sense and the others decide to take a break?

Yesterday, I tried to wash my hair after 4 days of grease sliding off and sticking to my face.  That was a comical routine trying not to get my ear wet! I took a piece of saran wrap and wrapped it around my ear, then taped it to my face.  While trying to pour cups of water over my head that I'm not suppose to tilt, I held a washcloth on my sore ear but of course, that was soaked within .057 seconds.  My arms and legs were flailing all over the place, I felt like a giraffe in a bowl of jello!  Needless to say, half my head got wet and soapy but none of it got rinsed.  I look super attractive!

That was quite the escapade.  I think I'm going to have to attempt it again today, as soon as I dream up a different method.  I may have one of the kids just drive me to a salon and have it washed.

I kind of wish they had just removed my femur bone...something substantial that I could see.  Instead, these microscopic bones happened in the nethermost reaches of my hollow head and it's hard to justify the pain and without a 12" scar, it's hard to remember that my body is trying to accept some new, shiny pistons and bones, oh...and the remaining pieces are trying to find their way home.

I found that pretty funny when the surgeon said, "Once everything finds it's way back..."
I will admit, I was thinking..."How about we make it easy on them and just put them all back where you found them...why the game of hide and seek?  Just kidding...I know what he meant.

Anyhoo....another lesson in patience and tolerance and long suffering, and did I mention patience?

Actually, I'm okay...getting real tired of laying around and walking like a super model with a stack of books on my head but whatever it takes to save my brain and nerves!  Today, I might try to get dressed in real clothes but then again...maybe not!

The kids will be home today.  At least I will have more than Bentley the dog to talk to.

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Friday, July 4, 2014

Otosclerosis- surgery

I kind of kept this one under wraps...with all that's been going on, I was embarrassed to bring up one more problem!  Ugh.

Just three weeks ago, I finally decided to see about getting my hearing aid fixed.  I have been almost two years with a broken hearing aid.  Turns out, it too all of 30 seconds and $200 to fix it.  The only problem is, when I put it back in, I still couldn't hear very well.

My audiologist did a hearing test and discovered that my hearing has gone from about a 50-60% loss to a 98% loss!   That is pretty significant.  I knew my hearing had changed but I was pretty upset to hear this number.  I have otosclerosis, the bones in my middle ear are diseased and thickened due to my autoimmune disease...likely Ankylosing Spondylitis...though doctors swear this isn't the case.  The rest of my joints are thickening and calcifying and that is exactly what has happened to my ear bones.  Ugh..

A couple of months ago, I played the organ at my friend's funeral.  Afterwards, while I played the postlude music, an old acquaintance came up to me to say high.  She sat on the bench beside me and apparently started talking.  I didn't hear her say anything but looked at her and saw that her lips were moving!  I was slightly panicked.

Shortly after that, I almost t-boned a fire truck because I didn't hear his siren, or see him flying through the intersection when I had the green light!

I relayed these experiences to my doctor and he said that the most serious thing that happens is that since the brain isn't registering that the ear is even working, it starts to shut down.  There will come a point, even if they fix it that holding a boom box as loud as it will go will not even alert the brain or auditory nerves.  He said I am already showing significant signs of this happening.  They suggested surgery.  Until he explained this to me, I had classified this surgery as something elective; like a nose job.  I'm not into surgery just for fun!

Well, the surgery took place yesterday!  I was so scared about this one.  I had no idea what to expect and how recovery would be.  He told me I would experience nausea, dizziness, vertigo, just to name a few things.  Sure enough...he was right!  Not only that, I can't cough, blow my nose, sneeze, bend over, lift or make any big movements with my head for 2-3 weeks! Oh, and I can't get my ear wet for a month! The nausea and vertigo should last at least a few days if not longer.

Yesterday, I managed okay but the nausea and dizziness were horrendous!  I pretty much stayed on my medications for pain and dizziness.

Today, since it's a holiday, the kids had to be with their dad so I'm going it alone for the weekend.  I have stayed in bed sleeping all day, up until now.  I haven't taken any pain meds or vertigo meds since last night but now the pain is pretty significant.  I don't know why I do this to myself every time!  I feel okay when I'm taking the pain meds so I think I can live without them and then the pain gets out of control!!  I also wanted to see if I could get by without taking the vertigo meds...no chance.

So, here I lay.

I was blessed that instead of a long incision behind my ear, he was able to cut through my ear canal and do the surgery that way.  I had exploratory and the middle ear bones removed and replaced with prosthesis and pistons.  He had to move a few things out of the way like the ear drum and such and as those move back into place, I will feel better.  It's hard to say how much my hearing will improve but they said I could expect a 20% increase at least. I will still need a hearing aid but it will at least work!

At the hospital, they got me up to go to the bathroom.  The nurse stood outside the door.  When I flushed the toilet, it was so loud, I let out a shriek!  It hurt my ear so bad!!! I almost started crying because I couldn't believe what I was missing!  I forgot that toilets flush!  She asked me what was wrong and I told her and fought back the tears because I was so embarrassed to be crying over a toilet! It was like that all day yesterday, the world was so loud and that created a little anxiety for me.  This in itself is pretty amazing since my ear is full of guaze packing, medication and a gel foam to keep the new bones from slipping out of place- yet it is all so loud.

Besides the feelings of nausea, vertigo and pain, I hate feeling blood dripping inside my ear and lots of cracking and popping which they say is normal.  It's not really my thing but I will be happy to hear my kids again without having to pretend I heard what they said.

As always, I had an amazing nurse!  Turns out she just moved into my neighborhood and I know her parents well.  Not only that, her daughter and Shelbie graduated together!.  She was awesome!

Well, that's about all the writing I can muster today...Oh, the bad news is...I can't clean for three weeks!! There goes my bread and butter...Hopefully while I live the weekend in my overdosed stupor, I can figure out a plan to make some money from home!
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