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Showing posts from January, 2018

The Broken Finger Saga

Today we had an ortho appointment to see how the infamous broken finger is doing.  There is finally some good bone healing but not 100% yet.   Another 4 weeks in a splint but just at night.  They want her to try to start working the ligaments and getting it to bend better.

We felt pretty good about that plan when we left.  Her finger is still a little odd looking but way better than it was.

However, as the day as gone on, her finger looks terrible.  It's so swollen which I don't understand.  It's bright red and hot and drooping way more, just like it was when it was first broken.  I'm so confused about what is happening.  I guess we will give it a few more days and see how things transpire. 

Shelbie has really stepped up to some major life challenges and I'm proud of her.  The whole driving issue is so hard.  I can't even imagine how difficult that would be, especially at her age.  We have had some good talks and she decided that she wanted to give her car to S…

Good news or bad news?

Do you want the good news or the bad news first?

If you are looking for good news, you might want to keep looking because you won't find it here.  You won't find even the slightest thing resembling good news here.  I thought about dressing things up to sound like good news, you know, using phrases like..."Well, at least..."  or "It's okay, I know something good is just around the corner."

But then I thought to myself, 'Nah' who cares?  The truth is, it's bad news.  Don't worry about trying to pray it away, convince me it's going to work out, brighter days are coming.  In fact, you don't have to say anything.  I don't even care if you read this to the end.  I just want to hang out and enjoy my bad news.  It's so exhausting trying to turn bad news into good and I'm tired.  I'm probably going to have a week long pity party, with a good measure of anger and resentment and maybe even some bitterness and I will celebrat…

The unraveling

This week is going to be the start of the great unraveling for us...actually, probably not THE great unraveling as I'm certain there will be plenty more months like this.

I've been anticipating these appointments with Spencer for weeks now, since Christmas. I feel like we are on a better track to sorting out the symptoms, the source of dis-ease and begin the arduous task of making a correct diagnosis, prognosis and treatment.  Not only for Spencer but I tackle my own kidney, liver and pelvis full of growths and stones.  Shelbie has decided to start the seizure medication on that will be interesting to see what, if any effect it has on her quality of life. 

Earlier in the week, I heard someone share a thought, that the system of  healthcare we have evolved into, is meant to work for people who are average and passive.  The kind of people who are willing to sit around, take what a doctor says at face value, comply with scripts of medication that most often  never ge…

Mamma Bear

I've been letting things ride with the GI department at the University of Utah after losing our GI doc.  I was hoping they would step up and do the right thing without me having to create waves.  It seemed like the Doc they gave us temporarily was going to hang in there with us but as of yesterday, that is clearly not the case. 

They did find us another GI doc but at a satellite clinic 45 minutes away from the hospital.  How ridiculous.  I've worked way too hard to get our team of doctors all in one place to have one 45 minutes away.  There are many occasions when one kid will be at Pulmonology while another or two are at Cardiology and GI.  All the clinics are on the same floor of the hospital and I can bounce between them all if needed.  I can't do that 45 minutes away and it just means more wasted time on clinic days. I'm not settling for this, but I am also too tired to keep fighting.

Sadly, they won't even deal with me, they keep calling Spencer directly and h…


Steve Jobs said, "You cannot connect the dots looking forward; you can only connect them looking backwards so you have to trust that the dots will somehow connect in the future."
I have had this draw to the past lately.  I'm not sure if I'm trying to understand all the dots in my life or trying to find hope that somehow, there is meaning to what we are going through now.  I look at these pictures and so many words and wonders fill my mind. 
Here's a little walk through memory lane... 
This was me as a chunky one year old hanging out on my grandma's sofa.  I lived with her shortly after I was born and for some time, because my mom had been diagnosed with  Non Hodgkin Lymphoma, right after I was born.  She was given just months to live and I was not an easy baby to care for when you are paralyzed and fighting cancer with two other littles under foot. 
Oh...the metal bars were not part of some 1960's high chair, that was my hip brace.  I was born with a con…

Cats don't always land on their feet

For my whole life, I was told, and believed, that cats always land on their feet.  I had no good reason to not believe this, especially when people would demonstrate this fact by throwing the nearest cat in the air and we would watch them land on their feet, but...I'm going to tell you otherwise.

A couple of afternoons ago, I was coming out of a medical plaza and the parking lot exits onto a frontage road beside the highway.  I was at the stop sign, waiting to turn right onto the frontage road.  It was late in the afternoon and the sun was hanging low.  I could see, not far off, a large truck coming down the frontage road.  He was clipping along at a good pace.  Just as he approached the intersection where I sat, something flew out of the bed of his truck!

Things happen fast in reality, but in your head it can really be quite slow.  I sat, staring at the thing now airborne, trying to determine if it was a plastic bag, but it seemed to have too much weight to be a bag, I thought ma…

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 …

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…

It's hard to say...Part 2

Here I go, doing what I do best...

Being a hypocrite!  I know.  Sorry to disappoint anyone.

Because you know why?  The whole Good or bad, hard to say idea is mostly hard to do.  Easy to say though.  It has a nice way of tumbling off your tongue.  It's catchy.

Here's the deal.  I'm pretty nervous about where things stand with Spence.  I received news on New Years Day that his liver is now in pretty rough shape.  His enzymes are extremely high, triply beyond the highest normal number.  Not just elevated...high.  Sam's liver enzymes have been rising and falling over the past year but never to these extents.  I also learned this week that a poor liver can cause all of Spencer's symptoms.  We've been looking at the wrong organ or answers!  I had no idea.  It stands to reason that when you have GI and malabsorption issues, the first place to look is the small bowel, colon; somewhere along that line.  No one ever thought to look closer at his liver until now.

I didn&#…

It's hard to say

I heard a woman retell a story of a farmer who responded to everything that happened to him with the phrase, "Good or bad, it's hard to say." When his cow got stuck in the mud, he said, "Good or bad, hard to say."  When his crop failed, he said "Good or bad, hard to say."

As we excel at being human, and with that flawed existence, comes an abundance of judgment.  We judge everything; people, animals, the weather, God...He can never do enough can he? How often do we catch ourselves saying...'Well that was nice but..." Too often if you ask me.

The moment we experience anything...we immediately place our judgments on it.  You wake up to the sun behind a wall of clouds and immediately feel depressed that rain is coming and that probably means gale force winds will come first and that means your hair is going to look crappy all day...

I can think of a few times over the past few months when I successfully lived this idea of waiting to see how it a…

Making everything better

Yesterday was a discouraging post.  Probably because right now, we have a discouraging life. I saw this thing on the internet and the headline read...52 tricks to make everything better!  I thought, 'That's exactly what I need!  It must be meant for me because I really need to make all this better...and fast!'  Here's how I'm going to fix my life, as per the article. (just a few that struck me as especially helpful.)

Buy a bomber jacket.  BECAUSE...celebrities, musicians and sports people wear them and it's the thing to do.  I guess that's why 2017 was so hard!  I don't have a bomber jacket so, I'm going to get one. Upgrade your camping gear.  YES!  That is the key.  My camping gear sucks! Just another reflection of all that is wrong in my life.  I did get a Yeti mug for Christmas and gee, it's awesome.  My diet coke stays so freaking cold!  Every day is way better with a quality diet coke mug.  Yeti...if you are lame and don't k…

2017...2018 Ready or Not

It's a New Year...Believe it or not, I have been working on this post all week long...


I GOT NOTHIN' TO SAY!  Well, not entirely true.  I have a lot to say but it may not be especially appropriate for a New Year's post.

New Year's posts are suppose to read something like this:

"2017 was the BEST YEAR EVER!!"🎉
It was such a great year...and then I would proceed to report on all the amazing things I accomplished this year, the places we traveled, the hobbies I excelled at, the weight I lost, how I made it to the gym every day, cleaned up my eating, lost my diet coke habit, found love, made new friends, the kids made the honor roll...

You get it.

I feel like there's a lot of pressure this time of year to be happy, grateful, hopeful and excited about what a new year is going to bring.  In all my planning for this post, I thought that maybe I would write that somewhat fictional piece and dress up everything we've been through this year into somethi…