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Showing posts from March, 2017

A Witness

I was expecting just another run of the mill night at the gym last night.  The kind where the 'meat heads' stay at their end of the gym grunting and groaning to sound strong and I would claim a little corner in the room where the Yogi's hang out and Plank, and there I would Spin on a bike for a few miles, do some rowing, a little TRX and finish up with some free weights.

Last night though, I actually decided to do an easier workout and took an inclined walk on the treadmill.  There were no meat heads in far end of the gym.  No one really at the gym at all.  For the longest time, I kept pace with an old guy on a bike behind me.

But then, a man and his son came in.  I knew them.  I knew them well but they don't know just how well I know them.  They have a son who passed away from Cystic Fibrosis a little while ago, he would have been Spencer's age now.  They have a younger son who also has CF.  I knew his wife and mother in law back when my kids were being diagnosed.…

Time and Money

I think I quit my job tonight.  I have not been feeling well all weekend and at work tonight, I was talking to the HR person and they have been having a hard time finding a person for the new clinic 20 minutes away but a few options for their clinic here in town.  I kind of just said, "They can have this job." It was my sleepy brain talking. I wasn't even shocked when I heard myself say that.  I just really don't care.

As the conversation went on, I suggested that maybe I would take the smaller clinic 20 minutes away. I think for so long, I've been trying to find a way to quit that job.  It is part of why I feel horrible all the time but I have had a hard time justifying the loss of half my income.  The smaller clinic only has one bathroom as opposed to 9 bathrooms.  It would be easier for me to manage with my declining health but a huge pay cut!  A huge pay cut but with commuting would take me the same amount of time, if not more each night.

Sometimes in life,…


Today I had a 90 minute conference call with the genetics counselor at NIH.  It was an enlightening conversation.  I was pretty nervous all morning in anticipation of the call.  I wasn't sure what to expect.  I wasn't sure if they were going to give me results from the Exome sequencing and on top of that, my mind was blank.  I couldn't come up with one single question to ask.  It was making me anxious.  It's not everyday you get the undivided attention of a world renown research center.

Just prior to her call, she sent me a power point presentation on genetics.  I had a minute to scan the 60 slides in the presentation.  Thankfully, this was just enough to get my brain into medical mode and my mind was flooded with questions.  Hard questions that I didn't want the answers to.

I've never been able to feel settled that they haven't been able to find the DC gene in Shelbie.  I have been told all along that maybe she has a mutated X chromosome that is driving …

Yet, they were diligent

Today has been a rough day in my world of Shwachman Diamond Friends.  I've never experienced such a tight knit group.  I think we feel deeply, the sorrow of others in the group going through difficult things.  One sweet family just got their son home from not one, but two bone marrow transplants.  The second one was successful but only to a point.  They found out today that the 'clone' cells in his marrow are back and he is not a candidate for a third transplant.  I'm not sure what the plan will be for them.  I think they are still trying to figure out what comes next.

It was heartbreaking news.  It made for a hard day.  I met tonight with my Bishopric.  I was reminded about the principle of Grace.  When I came home, I pondered more on the phrase, 'Grace shall be as your day.'  It gave me peace and I hope that in the current blows my friend has sustained today, she will too will feel God's grace; light that fills her day.  I made this tonight...maybe I will…

I'd Wanna Be Me Too!

There's a popular song on the radio and the chorus says, "If I were you, I'd wanna be me too!"

I kind of laugh every time I hear that song because no one ever says they wish they were me.  People have started using my name in derogatory ways.  Seriously!  I have lost track of how many people have said to me..."Gosh, I've been pulling a KATHY."

At first I was a little puzzled by that sentence...what does that mean exactly? They went on to explain that everything in their life was going wrong just like it always is in my life. I'm thinking if you looked up my name in the Urban Dictionary, it would read something like this...

Kathy- (Ka-thee) when nothing goes right.  Everything goes wrong.
          "It's a Kathy kind of day."  "I feel like Kathy."  "What a Kathy kind of week!"

I even had a doctor comment that her life felt like mine!  Her mom got really sick, her father in law died, her sister went into liver failur…

Stories that connect us

At the end of the aisle, sat a man on a scooter, waiting patiently while his wife sorted through the skeins of yarn.  He looked vaguely familiar and so did she but I was in a hurry find some fabric and leave.  I could feel him staring at me so I looked over and he smiled.

"Do you remember me?" He asked.  He looked vaguely familiar but wasted no time in telling me all about the accident he almost died in last year which was the reason for the scooter.  It didn't take long for me to fall into his story.  After 15 or 20 minutes, I still couldn't really place him but I felt like I had always known him.  A strange connection.   When we were through visiting, I said goodbye and overheard him tell his wife that it had been a long time since he was able to visit with me.  

There is no real reason for that story but it was a great reminder that we are all connected in the stories we tell.

It has been a quiet weekend and the kids were all in a pretty good place and actually g…

Big Talk

Several months ago, I watched this girl give a TED talk.  It was fascinating so I found her video on YouTube.  Take a look.

I found it so interesting what people said they wanted to do before they died.  Have you thought about that before?  I'm not even sure what I want to do tomorrow!

But the bigger question than that was "What would you do if you found out you were going to die tomorrow?"  All of sudden, the list of places to go was replaced by people to be with.  The one guy who wanted to make peace with his many of us put off important things that we could do right now?  Everything comes down to the people we love and surround ourselves with.

I love the idea of Big Talk.  I love how stories connect us.  I love to read stories from people I know and stories from strangers.  I especially love hearing stories and thoughts from my kids.  Sam and I have had some interesting Big Talks lately.  I snatch little bits of time when he isn't expecting it and ask h…

Remembering the past

I spend a great deal of every day trying to figure out what to write here.  It feels so redundant, another verse to the same song. At least that is what I have been telling myself.  Its true.  One truth at least but there's another is exhausting to put words to what is happening and what I'm feeling.  And quite frankly, living it once is bad enough, reliving it in words is painful.

The entire year of 2007 is missing from my blog, the year Shelbie went through chemotherapy treatment for 9 months.  It was a year that devastated me. I wanted no memory or trace of such overwhelming sadness, fear and difficulty.

There have been other moments when words were simply paralyzed at the awe of my life.  When my kids were clinically diagnosed with Shwachman Diamond Syndrome in 2000.  For a couple of years after the prognosis, I foundered.  I broke.  It all became too much and through a series of unfortunate experiences, found myself, committed to a mental hospital.  I was ther…

Family Time

We finally had a halfway decent night, at least for a couple of hours.  Sheesh, the days drag on and it's one hard day after another.   Shelbie continues to be sick.  This week her blood pressure has been crazy low...87/41.  I didn't even think a person could still be alive with a blood pressure that low.   Another week on antibiotics and there is no improvement.  Spencer had a metabolic crisis on Tuesday morning.  I had just walked in from a morning appointment he could hardly keep himself upright.  He had been at the gym working on a new weight routine and nearly passed out.  He came straight home.  you know its serious when HE knows he can't go on.  

It was a bit watching scaffolding crumble.  He was really struggling.  I ran to the gas station to get him some Gatorade Recovery and filled him up with sugar and starch. I knew if I took him to the hospital they would hydrate him and run a couple of bags of D5 and Sodium so I did a makeshift thing which I rea…

At Least I'm Not Dead

This morning, I got a call from the Social Security Administration telling me my social security number had been suspended.  It was a recorded call and they left a number that I was to call back in order to figure out what had happened.

I was quite concerned about this news but didn't think anything of the fact that it was a recorded call because every month, the IRS calls me to remind me about the money I owe them and it's a recorded call.  Anyways, I took down the number and called them right back.

There was an obnoxious calling tree just as you would expect from a government entity.  When I finally made it to a human being, sirens went off in my head!  The guy could barely speak two English words.  Before I even told him why I was calling, he asked for my name and birthdate.  I hung up in a big hurry.  I had a sick feeling it was fraudulent.

I looked up the social security administrations number and called them to find out what was going on. What happened next was kind o…

Every Day I'm Juggling

It's a given fact that money doesn't buy happiness.  I think we can all agree on this point.

It's also a given fact that lack of money gets you a deep well of depression and changes your mindset.

I could ramble on and on about this point but I'm not going to.

What about other assets in they buy happiness?

Possessions?  Hobbies?  Activities?
Friends?  Family? Health?  What about the vague sense of belonging and purpose?  Passion?

Many of these cannot be accounted for in any concrete way but we all know what it feels like when we don't have enough of them.

Last night, I witnessed a few little mental meltdowns with my little war weary tribe.  When it was all said and done, the crux of the problem is poverty...extreme scarcity.  Limited resources with limitless needs and wants.

I'm blaming it all on chronic illness. And me.

Up until a few years ago, I was the shock absorber for things that happened to them from a health standpoint.  I made every…

Taking a Break

I just had to take a break from the circus of mystery diagnosis.  This blog was/is starting to feel like a soap opera from the 80's.  Non-stop drama.

Nothing changed this week, still plenty of drama and excitement.

I got a note back from the Radiologist on Sam's tests.  They confirmed that his brain defect is bad enough that it warrants surgery. Normally, the cerebellum sits in the small indentations at the back of your head called the Foramen Magnum.  It's the opening to the spinal chord.  Sam's bony space is smaller than normal so the cerebellum and brain stem is being pushed down into the upper part of the spinal canal.  This is creating a pressure and limiting the flow of cerebrospinal fluid.

Surgery isn't always the first thing they jump to.  It's brain surgery and a lot of complications can happen.  They take into consideration the symptoms and how those symptoms affect the quality of life.  Symptoms can range from mild to serious and progress to cause i…