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Showing posts from July, 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 …

Post Seattle

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




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 anyt…

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…

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.  …

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 a…

Perspective

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 j…

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 …

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 p…

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 pro…

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.

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…

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.  …