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Showing posts from May, 2015

Life with Dyskeratosis Congenita

School's out and Sam couldn't be happier.

Tomorrow he leaves with 20 of his closest friends on a little trip up to Yellowstone!  He is more than excited and I'm excited for him.

I've been really impressed with his friends.  The girls who planned this party are twins.  What made me so impressed was how organized they have been.  They created the guest list then called a 'meeting' at their house to discuss the 3 day trip.  They had itineraries printed up and each day planned with activities that ranged from sightseeing in Yellowstone, to boating, playing at the beach, games, bon fires, hiking etc.  The family has a couple of cabins just a little ways from Yellowstone so the girls will be in one cabin and the boys in another.

They also split the kids up and each group is in charge of bringing and preparing food for all 20 people so every meal is covered by the kids themselves.  The parents will be there supervising but mostly the kids have been given responsibili…

You never know

Man, I feel like everyday is filled with loss or bad news of some sort.  It makes me count my blessings more than once.

About a week and a half ago, Spencer's best friend was involved in a serious car accident while serving his mission in South Africa.  He was driving and when another car veered into his lane, he reacted quickly by trying to avoid a head on collision and turned the car.  Unfortunately, they sustained a head on crash and the impact threw the car into the sidewalk where it struck a pedestrian.   The pedestrian was killed.

Everyone in B's car had injuries of some sort but none of them life threatening which is amazing considering there was absolutely no front end left to that car.  B had multiple breaks in his leg.  He sustained the greatest injuries.

He was flown out of the country where he was serving and to Johannesburg so he could get better medical care.  He had surgery and plates, screws and pins were put in place.  The plan was that he would come home t…

How Shall We Grow...

Yesterday was my first full day of work since getting sick two weeks ago.  It was rough.  I am wiped out! But at the same time, it was a good day.  Nothing changed really but my mindset.

Bruce Kramer, a professor at the University of St. Thomas, upon hearing the news that he was dying of ALS said this, "How shall we grow into the demands that are beyond us?"

I have not stopped thinking about that phrase.  He went on to talk about how we use the word 'fighting' to describe what we do when faced with a health crisis.  We fight it.  We are fighters.

I thought about this further, we really fight everything.  We fight disease, but we also fight against ourselves.  We fight our feelings of fear, guilt, shame, overwhelm...we want to feel nothing but happy and content and anything contrary to that requires a fight.

What would happen if we stopped fighting?

What would happen if we just chose to be accepting?  Did the needful thing?  Lived in the moment?  Gave ourselves permi…

Arms Flailing...

Sometimes, I think the world is just one big cruel joke.  Last night, after a long day, I sat on my bed and thought about the quote from the Hunger Games movie..."May the odds be ever in your favor!"   I mentioned on FB that I just need to change my alarm clock to wake up to a creepy voice saying those words.  It's fitting as everyday is a battle to just survive the trials!

Last night, Shelbie went to what is called a Shootout.  It's where many of the areas top photographers get together to do specialized photo shoots.  The organizer provides professional models, make up, flowers, location etc and then they all take turns posing the models and taking their best shot.  They learn new techniques and learn from each other.  The photos then get posted on a website for everyone to see.  Shelbie has been scouted out by some highly sought after photographers.  It's been a great thing for her.  But...There's always a BUT...

Last night, after the shoot, the organizer …

Time Marches On

Well, in our usual fashion, the trials of life are about the most predictable events.

I have been nursing my ailing kidneys all weekend.  I finally planted myself on the couch Saturday and didn't move.  Well, except to make a trip to the bathroom every 15 minutes.   I believe I have had more water in the last week than I have had in my entire life.  I am one well hydrated girl and up about 10 pounds!

Saturday night, my doctor and his wife even showed up at 9:30pm to bring me a Jamba Juice.  I had been throwing up earlier that evening and was feeling queasy and weak but I kept it down.  Sunday was more of the same.

Long story short...I passed not one, but two kidney stones this morning!  Early.  I'm so glad that experience is behind me.  Now I can work on the other two problems that are making me unwell.

I prayed fervently last night to pass this stone today.  Sam is getting sick again with a lung infection.  He woke up yesterday morning without any vision.  By last night, he…

I just didn't know

What a week.   What a very long and painful week that is nothing more than distant and small in the rear view mirror of life, yet huge as I continue to struggle with my new found problems. Lupus.  Addison's Disease.  Kidney that order.

This afternoon and evening has been the hardest so far.  Still not getting very far on passing this kidney stone.  Today it's been a lot of nausea, vomiting tonight, pain and feeling so very crummy.  I don't deal well with feeling crummy when it goes on for more than 2 or 3 days.  I've gone from taking one daily medication to 8.  I hate taking pills.  I hate the side effects.  I especially hate that my body has betrayed me.  I hate that I can't have just one thing to deal with.  I hate that having three major problems makes me feel crazy because all the symptoms are overlapping and it's overwhelming to think that I may never feel better.  I hate that I haven't even been able to get any rest.  I still have to work …

Well...this is crazy!

I can't make this up...

I have a kidney stone.   So, our grand tally of diseases and disorders is 3 in the last 48 hours.  I'm less than amused.

I didn't hear back from my doctor last night so I assumed the scans I did at the hospital had come back normal and the kidney pain was just from Lupus.  Well, I heard back this afternoon.

Let the fun begin!  Or should I say let the harvesting begin.

Who knew having a kidney stone could be so complicated.

You know me, I'm an over achiever so the doctor said drink a pint of water per hour.  I decided to drink three or four per hour.  That's no fun.  I can promise you this FYI, a kidney stone hurts much less when you are dehydrated.  When you have a steady river bombarding your little kidneys like a tsunami, it hurts.  A lot. Makes me not want to drink one more drop.  I would rather live with the pain I had prior to hydration than the pain I have post hydration.  Did I mention pressure?

So, in case you haven't had the p…

Heaven gets an Angel

My dear sweet friend Alisa passed away this morning.  After 8 long years of battling Melanoma, she is finally at peace having completed her tasks in this life with flying colors.

She came into my life so unexpectedly and changed how I looked at my trials.  She inspired.  She is beautiful in every way!  I will miss joining her in her journey, feeling of her love for her husband and three boys and everyone she came in contact with. Here is a link to her blog if you want to read about her journey. 

I want so badly to attend her funeral but I'm not sure I will be able to.

Today was a hectic day.  I spent all day at the doctor's.  One in the morning and then one all afternoon.  I ended up having to have a couple liters of IV fluids, got worse with the second one then had to go to the hospital because of it for scans on my kidneys.  I don't have a clue what is happening but so it goes.   Results tomorrow...maybe later ton…

The Perfect Opportunity

Today, I received the most perfect opportunity!

It was perfect in every way!

A perfect opportunity...

To become bitter.
To get really angry.
To throw a massive temper tantrum.
To question God.
To find out just how much resentment can unravel you.
To lose hope.
To give up faith.
To give in.
To just.  Give.  Up.

And...why would I want to pass up such a great opportunity?

I didn't.

So...I had me a moment.  I threw in the towel- well, threw it across the bathroom.  I cried a little, then I cried a lot and had me a sweet little pity party that lasted all of 10 minutes until I was so tired, I had to take a smallish nap.

Today, I was officially diagnosed with Lupus.  Lupus sucks!  It's not cancer but it's Lupus.

It is mean and angry and fighting against me on every possible level.  In this very moment, it is attacking my kidneys, every single joint in my body from my ankles to the bones in my ears including every rib which makes it really hard and painful to breathe. Since my k…

Happy Birthday Sam

Thursday, was Sam's 17th Birthday!  I can't believe 17 years have blown past already!   I can't believe Sam has gone from my hardest kid to my easiest and most amazing teenager!

He is considerate and thoughtful.  Kind, compassionate, funny, helpful, resourceful, attentive, obedient...those are just a few more words I would use to describe Sam at 17.    He has a tender heart and it has been incredible to see how much he has grown since Spencer left two years ago.  When Spencer left, he instructed Sam on his new job as Man of the House.  I can honestly say Sam has delivered on that account.

So, Thursday, we had a small little family party.  Every year, Marvel releases a new Avengers movie.  It has become Sam's birthday tradition to see the Avengers.   This year, was great because we have so many relatives here, it was fun to make a family party.  Technically, they aren't my relatives anymore, they are my Wasband's nephews and niece but they still call me Aunt and…

Another shoe drops

I think there should be a Heavenly rule that enables all mothers of chronically ill children to have perfect health and endless energy...and a money tree to have at their disposal.

It's not fun when the mom is sick.  As the mom, it's really not fun and I am not amused.

I haven't felt well for probably 6 months.  I have been so tired which isn't a huge surprise since I whine about it all the time here...but my pain has been increased and just some odd things that I pretended I wasn't dealing with and never mentioned.

Well, things have been getting worse.  Over the past couple of weeks, it's been increasingly more difficult to make my hands work and the pain has been constant and severe.  Things have to be pretty bad for me to cave and go to the doctor and last Saturday, they were pretty bad.  So, I forced myself to the urgent care early in the morning.

He took some x-rays of my hands and found that I have basically lost the joint in my thumbs.  Both thumbs.  …

Most Unexpected

It's been an odd week of sorted feelings.   Sometimes, emotional things don't really hit me until days later, maybe even weeks.  I realized today that maybe I have this aversion to facing reality.

Today, for some reason, I'm struggling.  I've thought about all the things that could go South for us and this stupid disease, Dyskeratosis.  I realized how blessed we are that the kids are doing remarkably well considering their marrow is just hanging in there, they have multiple holes in their lungs and heart, leaky valves, crappy pancreases, connective tissue disorders and the remaining list of deteriorating bodily functions.  It's such a polar feeling of opposites to be scared and blessed all in the same moment.  It's most unexpected.

Today, I read my dear friend's blog where her husband posted that his beautiful wife, Alisa has officially been placed in the caring hands of Hospice.  After 8 years of fighting Melanoma, there is nothing more they can do.  The…

Mother's Day and Anniversaries

Mother's Day...

Either you love it or you hate it.

It is not a day I am usually fond of.  It comes with so many expectations.  Expectations for others; for yourself.  It's a day when any maternal error you ever made suddenly surfaces like acne on your wedding day.  It's full of insecurities and regrets and most of us don't like to celebrate the day.  Yet, at the same time, if no one acknowledges our best efforts, that doesn't feel any better and worse yet, if they do!!  Then you feel guilty and selfish.  See?  Mother's Day is a quandary.

Complicate an already complicated day with your would be 24th anniversary...that is if you hadn't gotten divorced and then...throw in the 10th anniversary of your divorce!!!  Yep.  Complicated.

Oh, but it doesn't stop there... then invite your Wasband over to spend the day and eat dinner whilst you wait for your son to call from his mission and pretend to not remember that 10th is both your wedding anniversary and divo…

Stumpy McNuckles

Stumpy McNuckles.

Yes, that is the name that my kids have affectionately named me.  For real!  Not just recently either, they've been calling me this for over a year.  It's how I know they love me.  Last week, when we were in Utah waiting to get checked into the hospital, Shelbie asked me, in all seriousness what I wanted on my headstone when I die.

"Why? Do you think I'm going to die anytime soon?"  I asked.
"I don't know, it's just something I should know, in case."  She said.
"Well, I don't really care.  It's not like anyone is going to come and see me when I'm dead so put whatever you want on it."
"Okay.  So, you won't mind if I put Stumpy McNuckles?"
"Nope.  I don't mind if you put Stumpy McNuckles."  LOL....

I guess you are wondering how I got this name.  It's a funny story.  Well, not that funny but it's funny that my kids won't let it go!

Last year, while passing time at a do…

Surviving or Thriving?

If you're me, this is a big question!

All I have done for the past 10 years is survive.  I'm tired of just surviving.  Just getting by and never getting ahead.   It seems that health issues and making money consumes literally every second of every day without a break.

Each year, I make it a point to take a class.  Any class that interests me.  I have taken tons of writing classes, Interior Design classes,  and last year, my all time favorite class- The Gift of Imperfection by Brene Brown.   I actually took two of her classes last year.   I usually find something at a University just a couple of hours from here and take it online.  Brene Brown was offered through Oprah.

Oprah recently announced another class by Ariana Huffington called Thrive.  It's a six week course all about how to go from what you know you should be doing, to how to actually do it.  I sat on this offer for a few weeks and did a little more reading on it before deciding to sign up.

The class started last…

The Results Are In

Today marks the end of this chapter in our crazy, upside down world of Dykeratosis Congenita.

We met with our Pulmonologist this afternoon to get the final results on the kids' CT scans with contrast that was done last week.  

Before I dive into results...can I say I really like our new Pulmonologist!  Low and behold...he has been doing some studying on DC.  He was right up to speed and today was a great visit.  I really appreciate his bedside manner.  He is so good with the kids and they really like him too.  I know, at first, I wasn't sure we were going to be a good match but thankfully, it's all good.  I can see now he was just trying to gather data and figure out where to go since he was jumping into this mess after a couple of doctors had already started stuff.  So, he's amazing and awesome!

So, both kids have a scattering of pulmonary AVM's.  It's not good news but it's the news I was kind of expecting...or actually, it's news that doesn't s…

Even though

Even though I have kept a little more distance between me and this disease, it doesn't mean the kids have been doing all that great.

We are still dealing with the usual strange symptoms like increased headaches, shortness of breath and other oddities.  In our usual fashion, we just try to ignore it and hope it passes.

It gets to the point where it's all just too much.  I think I hit that wall about two months ago.  Maybe it's good that I am juggling multiple problems at once so I don't dwell for too long on the things that hurt the most.

Even though, we've been ignoring a lot of what is going on health wise, I still get frustrated at the way this disease messes with your head.  For a little while, things have seemed pretty normal and I found myself wondering again...why this year has felt so hard.  Then I remember that it's been a crazy roller coaster of a year so far!  

One day, the news is so grim, the next we are managing and even moving on.  It doesn'…

Cardiac MRI...again

Life is crazy busy.  I'm not even sure how I make it through each day but somehow we are keeping just above the current.

Last week, we had to make another trip to Utah for more cardiology testing on Shelbie.  Part of me really wanted to cancel because I'm just not certain that we are going to get any good information from this test on her.  I think our problems are more lung related but who knows...I might be surprised.

It was a very strange day at the hospital.  Same test Sam had a few months ago, yet it took twice as long and it was just completely different.

The nurse kept coming out to ask me the weirdest questions.  Like, the first time, she said, "Do you know if your daughter has pulmonic valve problems?"

"Yes. Why?"  I asked.
"No reason."  She said...

That's odd.  Doctor's really ask a question for no reason?
Then she came out again, "Does your daughter have shortness of breath?"
"Yes.  Why?"  I asked.