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Long Days Ahead

As is customary around here, it's either feast or famine in just about everything.  We rarely experience a day that isn't full of extremes, there's always too much of one thing or another. 

Today was just too much work.  Here we are after 11 pm and I just got home after being gone since 7:30 this morning.  Back to back appointments this morning in town, then I had a walk through on a job site in Idaho Falls and then off to Pocatello for my part time job there.  On my way home, I stopped in Rigby for a meeting, then Burton for a meeting then here for a meeting and then my night job!  Whew...! 

In between, I got a special treat.  I got to hear Shelbie sing.  The last time Shelbie sang was 4 years ago when she sang the National Anthem for a baseball game in Idaho Falls.

On Thursday of last week, my mother in law passed away- my ex mother in law if we are being particular.   The kids didn't get to spend very much time with her but she make a lot of effort to stay close to …
Recent posts

Pacing Sam

It's a strange thing to watch your child live with a pacemaker.  
Last week, Sam had an appointment to have his pacemaker interrogated and check in with our Cardiologist.  Interrogation consists of a guy from Boston Scientific who wheels in his computer that looks partly like a suitcase and a dated gaming system.  They hook Sam up with wires on his arms and legs and hang a large disk around his neck that encircles the pacemaker that still bulges from under his skin.  From there, they play with is heart rate.  With a simple, split second movement, his heart races like he was mid triathlon, yet there he sits beside me but again, in a brief second, it slows back down.  At one point, they shut the pacemaker off altogether to see what happens.  
I sit beside Sam, watching his face that shows no reflection of these changes going on inside of him and I just want to know what he is thinking, how all the thoughts in his head add up.  Sometimes, I think he is doing fine; that the pacemaker …


In other news, I have secured an appointment with a Nephrologist but not for another two weeks, in a town nearly two hours away.  If I had to hear one more medical personnel tell me "Let's give it another week." I am going to punch them in the throat but I'll do it like a lady of course. I am done and over peeing blood.  I am done with the freaking pain and no pain relief.  I'm done.  So, I took my health into my own capable hands and made my own referral to a specialist.   
I decided, since many doctors lately don't like dealing with me, I would just start out being offensive instead of blindsiding them with my knowledge and critical thinking skills at the time of our appointment.  There are four doctors at the clinic I chose, so when I was talking to the receptionist, she asked what symptoms I was having and I told her.  She deemed that I needed a doctor sooner than later and suggested the name of the provider with the first opening. 
I responded with a li…

Story telling

I'm not entirely sure why I was sitting in a dentist chair early this morning.  The text message last week said I needed to show up today, so I did.   I was hoping and praying I wasn't going to feel discomfort at today's appointment, I mean, when was the last time the dentist didn't invade your senses with something foul tasting or uncomfortable?  
As I laid down, the rollers from the back massage making its way along the landscape of knots that framed my spine, the dental assistant was fastening the paper bib around my neck.  Even though it's the standard issue, you feel silly and I think it could use a redesign.  I'm certain they used the same bib some 43 years ago and probably longer.   The sweet assistant, then proceeded to ask about the money I won from the Secret Santa.  It had become the talk of the office from what it sounded like. 
"It's so cool you won that money from the Secret Santa!" She said.
She's not the first person to commen…

Shout out to Nigeria

One thing you may not know about blogging is, you get a lot of spam!  You get a lot of traffic that can not be justified.  For example...This week, I acquired over 1000 new friends from Nigeria, in addition to my closest 3000 readers in Russia.  I had no idea 1000 people in Nigeria had such an interest in our family and Dyskeratosis Congenita but apparently so. 

Yesterday when I asked for prayers, I'm certain these new 4000 friends or so answered my plea and things should start turning around soon.

Probably not, actually, because today, they all left my blog.  You know your life is more than even strangers can stand, when the hackers and spammers run away from you!  We have our own built in internet security, forget McAfee!  We've got me!  My life sucks the fun out of even strangers lives, I mean that's great! 

These hackers are notorious for blog stealing and identity theft, but they read one entry on this blog and they fled.  So, if nothing else, there's that.  I pro…


I could feel the winds of change sometime last year, when I kept waiting for the bounce back from an overwhelming set of problems that seemed to hit at once.  I never got the bounce I had come to count on, even expect.  I could feel in my bones, that things were getting harder.  Still, I kept telling myself, "Don't worry.  It will all feel back to normal soon."  
I'm waiting...for normal.  Even an old normal that was still very dysfunctional and hard would be lovely! 
At the grocery store early this morning, I ran into someone who made their semi annual inquiry into the kids and such, not because they don't care, it's just that we only run into each other in the pasta aisle once or twice a year.  I gave the quick run down because I know she cares, but she was clearly overwhelmed with just the events of the past month...she said, "I don't know how you keep going.  I couldn't do what you do."
Usually, I shrug off comments like that.  I haven&…

Moving Day and other events

It's that dreadful time of year when Sam thinks he needs to spread his wings and flee the nest, and that he did!  He and his cousin were able to sell their contracts from one housing place to rent at the  newest complex in town.  It's a two story unit and he is in Heaven!  The managers are really excited for them to be there too.  One of the managers lives right across the street from me which is kind of cool.  They are paying much less than the one they had and it's way nicer.  As you can see, the apartment is extremely bright!  A large sliding glass door to let the morning sun in, a small balcony and then the brightest lights you've seen throughout the apartment.   They are well designed and I'm happy for him.  

 Sam's pretty apprehensive about starting school again.  We have all sorts of support in place through the disability office, which has been amazing, but he is very much overwhelmed with it all.  I hope once he gets through his first week, he will fe…