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Showing posts from July, 2015

Heaven Help Me!

I'm not sure if this is a normal thing for those of us who live the life of chronic illness but every now and again, I get to the end of the proverbial rope.  The strange thing is, it never seems to happen when we are in the throws of problems, it seems to happen when things are relatively quiet and calm on the health front.  That is so annoying because then the quiet and calm is ruined with uptight and anxiety.

Every little thing is bugging me!  Every little thing is setting me off.  I'm not normally like this.  I don't really understand what is happening really.  I guess I don't realize how much things build up inside and when it's safe, and life is quiet, it bubbles up and overflows.

Early this morning, I'm talking EARLY...Shelbie came into my room to wake me up saying we needed to go to the hospital.  She had IVIG on Friday and has been suffering all weekend with the headache.  I have made every effort to put together a cocktail to keep her comfortable but…


I've actually had an interesting week of sorts.

I'm sort of sick of people and the way they define others.  Just because someone reads a page on this blog, or sees me not quite at my best, doesn't mean they know me. Just because something frustrating happens doesn't mean I let it ruin my entire day.  I am not a day on this blog.  I am not a mood that lasts all of 1 hour.  I am not a disease. I am not lonely.  I am not anything you think I am.

In fact, I like to think of myself as undefined.  Someone once said I was mysterious.  What is it about human nature that we have to define people?  I am amazed what people will argue about with total strangers.  It is staggering how you can't even say what you feel anymore without someone correcting your thoughts. It's kind of frustrating to me.  I guess it all comes down to ego. We somehow have this need to one up each other.  If someone has a story to tell, it never fails, someone has a better one.  I think social med…


What is it about Friday?

Even though I work through most weekends, there is something about Friday that feels different from Thursday, it feels like a deep breath.  A deep, cleansing breath and my shoulders relax and I am...tired!

Friday is my night to sit and do nothing, go to bed late(r) and sleep in, at least get an extra hour of sleep than usual.  Trust me, that's big!

It's hard to believe another week has come and almost gone.  Spencer will be home in 5 days, but whose counting.  I have a ton of work to accomplish before he gets home so I can take a couple of days off.

 Today, we got Shelbie's transfusion out of the way.  I don't know what it is about sitting in a hospital for 12 hours that is simply exhausting!  Her blood counts didn't look so great either.  Her white count was lower than we've seen in awhile and she is neutropenic.  Her blood pressure was really low as well, 90/52.  Other than that, everything went well.

Well, I have a big Saturday pla…

A little hiccup

We had a little hiccup today in our run of doctor free days.

Sam has had an inflammation in his eye for weeks.  I have been keeping an 'eye' on it.  It can be completely red as blood, the entire white of his eye and after a couple of days, it's cleared up so I think it's better but it comes back again just as angry.  There is no discharge or anything so I haven't worried about pink eye.

The last couple of days, it's been doing better but then tonight, I noticed a little pool of blood in the corner.  I have a crammed week with hospital visits the rest of the week so I told him to hurry to the car and we would run down to the after hours clinic.  We got there just before they closed.

Turns out he likely has Scleritis, an inflammatory disease of the sclera of the eye.  Dyskeratosis Congenita can wreak havoc on the eyes.  We will start an eye drop and hopefully, it clears up.   It's the same eye he loses his vision in and he has a cyst on that eye as well.


Crazy Cat! And Mouse

The other night, I went out to the garage to get something and this is what I found.

I don't own a cat!  My garage doors were locked up.  I don't know how long he was in there but he certainly appears to be content.  Cats are crazy!  They have this issue with entitlement I think.  He just laid there staring at me like, "What do you want?  Shut the door!  I was sleeping!"  He didn't seem to care he was laying on my car as much as I cared!!!

This isn't the first time the cat has been around.  He mostly resides in our backyard.  He keeps hopping the 6' fence.   I don't really mind if he is wandering around but he needs to learn some boundaries! is my next issue...MICE!

Earlier in the week, Shelbie was headed to bed and had her window open. She asked Sam to come in and kill a spider in the window well that was "Making too much noise."  
I said, "Shelbie, since when do spiders make too much noise?"  I went to the window and …

The weight

It's true what they say, you often don't notice the weight of something you carry until you feel the weight of its release.

I think the past month or so has been an evolution of releasing.  Not because of anything I did, it just happened.  Things medically, have finally slowed down for the kids. We have fallen into our new groove with hospital visits for pulmonary therapy three times a week and a relaxed summer schedule.

 It almost feels like God is clearing out some space so that I can take care of other matters in life like, being there for my parents, getting ready to transition Spencer home, and taking care of my own dumb health problems and wrapping up a few months of an intense workload.

I didn't realize how worn out and threadbare I had become the last few months.  Today, I slept right through my alarm and didn't even move until 8am!  A personal sleep record for me.  That's like 6 hours of sleep!  (It was very late when I went to bed!)

There is something u…

The last care package

Today, I mailed out one last care package for Spencer.  He will be home in less than two weeks and he is really anxious about the move home.

I can see why.  He is doing what he loves to do.  He is happy and healthy.  He has a purpose and is focused each day.  It's much harder to find your purpose and focus when it's just up to you and no one else is telling you how it will be.

So, I have been wracking my brain to come up with a way to make the transition easier.  I scoured the internet and found a lot of things but not exactly what I was interested in.  I saw a lot of pictures of 'finish lines' and banners that read, "you're done!" in regards to missionaries coming home.  I realized that I didn't want Spencer to treat his mission like something he had to check of his eternal list of things to do.  That makes it sound like it could have easily been a burden.  It wasn't.  At least for Spencer it wasn't a burden or task on his list of things to…

Standing on the outside

Tonight, I had a couple of deadlines to meet; one for work and one for a class I am taking.  I also had to get started on an assignment for another class.  By the time I got the deadlines met, I had to start on the assignment.  It was 10 pm.

Part of my assignment was taking night pictures of signs that represented my life.  I drove up to the hospital, with the thought of taking a picture of the 'emergency' sign.  Once up there, it just didn't seem like the shot I wanted.

As I was leaving the circle drive, a white truck flew up the driveway of the hospital and into the circle drive where patients are dropped off for the ER.  I was caught off guard by the speed at which they traveled so I just sat there, stunned.

The truck hadn't even come to a full stop when a woman jumped out of the passenger side running to the main entrance doors.  She didn't realize that because of the late hour, those doors get locked and only the ER doors are open.  The young driver jumped o…

Catching up

Life right now is all about getting caught up...

For me...It's about catching up on 'stuff' before Spencer comes home.  I'm afraid to admit that I just did his laundry!  Yes...he left two years ago and I closed his bedroom door and didn't step foot in it again!  So, ya...clean room, clean sheets, new pillows, new curtains...

I am also back to applying for work!

Again...It seems life for me is all about feast or famine.  Unfortunately, I haven't exactly arrived at the 'feast' stage.  I don't think I mentioned this before, or maybe I did...I got slammed with an $8000 tax bill for 2014.  I applied for an "Offer In Compromise" to have the bill reduced.  Apparently, the office I sent it to in Tennessee doesn't communicate with the tax office who sent me a mean letter saying they were placing a lien on my house.   Of course...they never include a phone number until the threatening letters start arriving.  They say I need to pay my entire de…

Exhaust the Little Moment

This weekend finally arrived!   Slide The City!!  We bought tickets for this event the very first day they became available back in February!  It has been Sam's dream all year!  
Slide the City is a 300 yard slip and slide!  They set it up down one of the hills in town and away they went!  We bought an unlimited pass so they kids could slide from 8am til 5 pm as many times as they wanted.  They also got a cool hat, tube, mouth guard, t-shirt.  I sat on the blanket and supplied drinks and snacks and enjoyed the people, the music and basically doing NOTHING! 
It was well worth the money.  I was surprised at the turn out though.  They said they sold 2000 tickets but it didn't feel like 2000 people in attendance.  It was sort of weird because when I told people we were doing this, they looked at me weird like..."Why?"  Why?  Because you only live once!  That's why! 
Wow...two blogs in one week with pictures! 

Even Shelbie had a great time!  She is a trooper.  Her fr…

Playing Hooky

After Monday's dramatic evening, everyone was feeling blah on Tuesday so...we had to play hooky!

There is this place not far called Bear World.  It's a drive through park where you can see all kinds of wildlife.  It's been around for a long time but we have only been once.  We went the very first week they opened and it was expensive and lame.  I think they only had one bear and it slept in its den the whole time so we didn't even see it.  They had a few deer and elk but we see those weekly just in the area.

Shelbie mentioned earlier this year that going back was on her bucket list.  It still looks about as lame to me but what the heck?  We went yesterday.

It's still horrendously expensive and borderline lame but we did have a good time.  We always have a good time together.  So, here are some pictures of our afternoon!

It was a fine afternoon.  Just nice to regroup and slow things down a bit.  I can't say it's a place I will ever go back to though.  I gu…

It's all my fault

Here's a mind bender for you...

Most of the time, as parents, we screw up!  We make both large and small mistakes.  Hopefully, we discover our mistakes, course correct and carry on.  Sometimes though, you find out too late that a mistake was made and there is nothing that can be done now except for therapy.

Sometimes, you find out about those mistakes in the pillow aisle at Walmart, while a Walmart employee stands by pretending to work just to find out how the argument ends.  ;)  Other than the nosy Walmart employee, it's not a bad place to pick a family fight; there's plenty of sound absorbing materials in the pillow and memory foam aisle.

There's your Tuesday life hack! (You will want to repin this for safe keeping and fight nicely reminders!)

So...what is my crime?  I'm a little embarrassed to admit it...

I am being accused of keeping us a close family and raising my kids to love each other...TOO MUCH!  But that's not all...I am also being accused of being s…

In the details

Well, I took another road trip this week.  Not one I was planning on so I didn't take much time out for blogging.

Last Monday, my mom had a stroke!  Completely unexpected.  In fact, when my dad called to tell me, he said, "Mom's had a stroke."  I thought in my head that he was referring to his mom, my grandma.  I wasn't expecting that it was my mom!  I was pretty much shocked.

She was blessed to have good doctors and thorough doctors who ordered appropriate tests.  It could have been so much worse and she isn't out of the woods but doing better than most do with strokes.

I have had a lot of time to think.  Something I don't do a lot of.  I'm usually working, tracking down kids, running to the hospital, running to the doctor, researching...anything really to keep my brain from thinking about anything too deep.  When you are driving for 8 hours straight, there isn't a lot to occupy your mind.

Last week, Spencer wrote in his letter about how his comp…

Sam in Summer

Sam.  What a little busy body he is this summer.  He is by far my most social kid and it's a little weird.  I'm not usually the type of mom who has an organized, planned,  summer schedule.  I did when they were little and I was home being a mom but when I got divorced, that sort of changed.

It's been tough to get him to find some balance between friends and family so we are working through some things.  Little by little, I add some new rules to the summer.  At first he pushes back a bit but then comes around and it's not too painful!

So, we have some growing pains this summer.

Sam is a great kid so I shouldn't be complaining.  It's kind of funny, there's only one bit of mischief he has been into already.

Bridge Jumping!  I hate bridge jumping.  I have forbid my kids to ever go bridge jumping!  Of course, Shelbie never did, Spencer sneaked around a couple of summers to do it and now Sam!

At least he fessed up sooner than Spencer ever did.  When asked why he…