Sunday, May 31, 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 responsibilities and expectations to be well behaved.  It's an awesome group so I'm sure it will be fun!  I wish I was going!

I asked Sam if he thought I should call the mom of the party planners to let her know that he has some health conditions and make sure she has my number.  I'm not too sure what is going to happen with Sam's faulty lungs being up in that elevation and hiking 10 miles. He said, "I think that's a good idea."

I was surprised because he always says I worry too much.

So, tonight, I made the call.  If that wasn't awkward!  I don't even know this family.  I know of them but we aren't besties or anything.  I wasn't quite sure how to start the conversation without making the situation sound dire.  I think it went something like this...

" Hi, I just wanted to let you know that Sam has some little health issues that won't be a problem but just thought an adult should be aware on the off chance something comes up."
"That's good to know.  We have some kids with asthma who won't be participating in some of the activities and another kid who's leg hurts sometimes so they will be staying back at the cabin with me."
"Well, Sam doesn't have any activity restrictions but he has a hole in his heart and several in his lungs and he has a failing pancreas and bone marrow failure as well.  So, if anything is going to come up, it will likely be in the area of breathing and maybe feeling sick after he eats but nothing serious."
"Ya, it sounds scary.  It's just this crazy disease we have.  It's not a big deal though.  Don't worry.  It's not like he's going to drop dead or anything.  I'm not worried about him going at all.  It's fine.  If something happens, just call me and I can come and get him or if it's serious, call 911 and just tell them he has heart and lung issues.  Really, nothing's going to happen!"  I realized I was talking in this rambling, princess falsetto like you would hear at Disneyland.  Maybe I thought it would sound less gloomy if I spoke in octaves!   I don't know what I thought.
"What's the name of the disease so if something happens I can tell the paramedics."

This is where I didn't want to go!  Now it sounds serious!

"It's just so rare they wouldn't have a clue what to do I mean like less than a 100 people in the United States and only 4 with the mutation Sam has and three of those 4 are my own kids and it's really not a big deal nothing is going to happen I really don't want you to worry or be afraid that he shouldn't do something i let him do everything I mean what's the worst that can happen he needs to be normal live a normal life he has his rescue inhaler and other inhalers and his medications...."

Notice the missing punctuation?  Ya, it was missing when I spoke this run on sentence!  There comes a point when what was suppose to be a 'here's my number in case Sam gets sick' conversation turns into, 'are you kidding me?  Why are letting him leave your sigh?' kind of conversation.  I kept talking trying to downplay the reality but it kept sounding worse.  I hung up and kind of chuckled to myself...

That didn't exactly go well!

That's the reality.  I don't want to scare people or sound like we have overwhelming, huge problems but they still need to watch out for random things that could happen.  If I were watching over 20 kids, I would want to know...just in case.

Well...I will sure feel rotten if my Disney, sugar coated story backfires and Sam drops dead on the mountain for the 10 mile hike!

The truth is, that's life.  But...sometimes it's better to live in our little world and not venture too far out of our own backyard.  It's then when we realize how different and scary we can be.


Saturday, May 30, 2015

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 this week so he could be taken care of.  He was due to be released from his full time mission in two weeks anyways, so coming home two weeks early isn't too bad.

Well, it's complicated.  He is being charged by the prosecuting attorney with Manslaughter.  In Africa, it doesn't matter what the circumstances are, if you kill a man with your vehicle, even if you aren't at fault, it's manslaughter.  Because of this, B is not allowed to come home until the legal situation has been resolved so he is staying in Johannesburg for now.  Can you imagine?  Can you just imagine what that is feeling like to him and his parents?  I am sickened when I think about this.

I've done a lot of reflecting on life.  I thought how blessed and lucky we are.  In fact, I was telling someone that I worry what is coming next because things have been going so well since Spencer left.

Well, Shelbie was standing beside me and said, "Are you freaking kidding me?  Things are going so well?  Are we living in the same house?"

Her line of questioning caught me off guard...I had to stop and think about all the bad things she might possibly be referring to.  And then....I remembered.

Still, even remembering the hard times we have experienced, I feel so blessed!  Blessed in so many ways.  I suppose the reason why I have felt this is because of the Atonement.  The enabling power of the Atonement.  The mysterious way that Jesus Christ's mental anguish in Gethsemane and his physical suffering on the cross, allows me to have my own burdens lifted so that even I don't feel them upon my shoulders.

I realize there are moments when I am overcome with sadness, worry and grief but those moments pass.  It's nothing short of a miracle that I can literally feel like my life is not too least this week.  My kids are safe.  My kids are happy.  My kids are feeling okay.  I get to be their mother here on earth.  I have somehow managed to work 14 hour days the last two despite feeling very sick and very weak.  I got to be in the temple this, it's all good.

You never know when these fleeting moments of contentment will give way to a feeling of another variety but for now. I'll take it. I can promise you this...the winds of change and uncertainty are blowing in but I feel confident in the plan of my Father in Heaven and I know whatever is coming will bring with it a measure of blessings and angels, straight from Heaven.


Friday, May 29, 2015

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 permission to feel whatever surfaces in the moment?  That might mean we actually had to be honest instead of fronting our way through a very difficult life? Gosh...what would that be like?

When we feel tired...we rest instead of fighting to stay awake.
When we feel rushed... we slow down instead of fighting against time that we can no more demand it slow down than force it to pass quicker.
When we feel sad...we be sad instead of applying superficial band aids of happiness.

Yesterday...I tried to live this question...How shall I grow into the demands that are beyond me?

Well, I was accepting of my situation.  Knowing full well it would be a physically demanding day, I tried to be mindful of the moments when I needed to rest and the moments when I could push forward just a little.

When anxiety over certain things bubbled up, I  acknowledged it and rather than fight against it, gave myself permission to feel it.  It's amazing how quickly it dissolves when you can look at it for what it is, then come back to the moment.

Above all, I was more grateful than usual.  I fully realize that things are happening in my life that I didn't choose, I don't want but somehow I need.  With that, comes the realization that if God is going to bring me to it, he will surely bring me through it.  I felt great comfort today knowing that when things are beyond my comprehension or skill set to solve, there is a God making it all right and getting me through.

How will you grow into the demands of your day?


Wednesday, May 27, 2015

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 suggested they all meet at Olive Garden for a late dinner.  Shelbie went along.  The models, the stylists and photographers all went.  At about 9:30 pm, she texted me inquiring the name of my most recent stalker.  I asked her why and she texted me a name, asking if it was him.  IT WAS!!!  What are the odds?  She was with people who live nearly 2 hours away from our home!  She was sitting one person down from him!  I couldn't believe it! He was at the photo shoot!  It just seems impossible!  The guy has a restraining order in the State of Washington and a violent history against women and here my daughter is, sitting beside the very man who stalked me for 2 years!  Ugh.

Today, we are in the hospital for IVIG.  I had to sneak off for a doctor appointment.  I didn't get bad news but not great news.  He wants to do more specific testing and asked me to go off of all the medication I just started so that it doesn't interfere with the testing he wants to do.  I will go off everything for a week, then head back for blood work and wait for those results before starting back up, if I start back up.  I dread going off the medication.   I have been feeling a little better and don't want to slide back to where I was three weeks ago. Such is life.

I don't even question God anymore.  Not that I ever did but now, I have just accepted that life is hard and it's going to get harder.  We need to be refined and we need to be fit for Heaven.  That can only happen through testing and trying.  It sounds negative but really, I don't even count on easy days rolling around anymore.  That's not to say there aren't blessings in each day but it certainly takes some hunting.

When I got back to Shelbie's room at the hospital, she was still zonked out on meds and the TV was on The 700 Club, some evangelist show.  The minister was telling a story about a person who had been swimming and got into trouble and started drowning.  They were screaming and flailing their arms trying to stay afloat.  The onlookers kept telling the lifeguard to go save the person.  The lifeguard stood still and continued to look on at the struggling swimmer.  The people watching were getting angry at the lifeguard.  Finally, he dove in and brought the swimmer up to the safety of the shore.  Later, he was asked why he waited so long to save the swimmer.
He replied, "I had to wait until he had become weak and wouldn't fight me in the rescue efforts."

I didn't hear the point the minister was trying to make but I heard the point in my own head.  How often do I flail my arms in discontent and panic?  How often do I fight against the will of the Lord?  Even if He did come to my rescue, I would probably continue to flail and hardly notice the relief being offered.  It's not until I am weakened and tired that I can see the help and accept it, knowing full well, I can't do it on my own.

I can honestly say it has taken my own health crisis to see that I can't continue on the same road, at the same pace I've been going.  My body is clearly saying 'No' but I keep pushing the limits, thinking I can make something from nothing with a little more work, a little more effort, a little more attention...a little more.  In many ways, I think the latest trials are to weaken me, keep me humble so that I will be better fit for Heaven.

It sounds like an easy concept but when you are drowning, it's instinct to fight and flail; not be still and wait to be rescued in a weakened state.  I am not good at being still.  I have never been good at being still.  I have always been so independent, relying on my own best efforts so the learning curve in this concept is steep!


Tuesday, May 26, 2015

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 was feeling miserable.  Tomorrow Shelbie goes in the hospital for her transfusion so basically, I need to bring my 'A' game this week...not my suffering, kidney stone game.

On Sunday, quite unexpectedly, I got the call that my Aunt had passed away.  It was a surprise for sure but she apparently went quickly of heart failure.  It's been a week of losses.  With each one, it reminds you that life is fleeting and fragile.

Tomorrow, I undergo more testing to fine tune my diagnosis.  The whole red blood loss mystery is still looming out there and I'm not sure where that testing will lead. I know my doctor is pretty concerned.  Me?  Well, for now, I'm focusing on the needful and getting caught up on work and continuing this journey with God.  Anxious to see where he will lead us to next, what blessings await and how all of this will translate into goodness...


Saturday, May 23, 2015

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 through all of this.  I still have to be a mom.  I still have sick kids!  None of that magically goes away just because I don't feel good and whine all the time!

I'm sure things will improve eventually, but right now, all I see are the trees and no forest!

Which brings me to my next point...

Funny how you just don't know what you have until you don't have it anymore.  Like your health.  Like the sun shining. Like hands that aren't in pain and bend the way God intended them to. You don't notice the way you bounce from one task to the next until doing that is more like pushing through mud.  You don't notice how little sleep you were getting until you find yourself needing to sleep all time.  You get the picture.

At the same time, I didn't know how much the events of this week could make me feel so blessed and grateful.

My thoughts are consumed with Alisa, my friend.  It's not like we knew each other forever.  It's not like we ever spoke to each other.  I never took her a meal.  I never sent her a card.  I only met her once!  Once.  We were in Seattle at the same time, different hospitals.  I met her for all of 10 minutes but it was profound. It was a reverent and Holy moment.  We shared a journey of learning and growing through trials of faith.  It's a connection I can't explain.  A connection that was surely a tender mercy for me. And now she's gone and I couldn't go to her funeral.  I couldn't indulge in one more helping of her amazing spirit. I didn't know how much she affected me until now.

I feel blessed that maybe all this dis-ease is here to teach me something about all the things I didn't know needed to change in my life.  I need to figure out how to work smarter, not harder.   I need to spend more time with my kids.  I need to manage stress better.  I need to take better care of myself.  I need to slow down.  I need to be kinder to myself.  I need to do more to help others feel less of their own dis-ease.  I need to spend more time in the places that really matter.

I guess, in all of this.  It's better to know.  It's good to know what you didn't know.


Thursday, May 21, 2015

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 pleasure of giving birth to calcium oxylate, (kidney stone) I'm going to fill you in on the fun.  They call it a stone but in reality, it's more like a star fish with daggers on each pointed limb.  At the end of each dagger is a fish hook.  Why are they shaped like this you ask?

Well, they really like residing in kidneys.  Not in bladders.  Not in Ureters.  Just your kidneys. Rather than slosh around in there, they really like to hunker down to assure they don't get washed away at the first sign of thirst.  Those daggers and hooks are only so effective because eventually, they must leave.

Now, if it was a stone, it would just roll on out of there at the first sign of water and not put up a big stink.  But no, it has to be a starfish with daggers and hooks and leaves clawing it's way down your internal plumbing.  Keep in mind, I have yet to experience the grand exit but I'm bracing myself because as you know, there are no shortage of kidney stone horror stories to prime you for the event.

Right now, I still get to enjoy the anticipation of the exit every 15 minutes when I  run back to the chambers.  You can't just sit yourself down and get to business.  NO, you have to pee in a hat.  That's right...What's that?  A hat?...Never mind...It catches the urine and then you get to strain it.  Basically, the whole process takes a little over an hour.  Maybe I'm exaggerating a touch...suffice it to say...what a nuisance.  I don't necessarily need a souvenir of this week, I'm not sure why the doctors do.

Upon hearing this cheerful news.  I went down on the water, determined to get that sucker out sooner than later.  Here's a visual... the hat doesn't hold as much liquid as the amount I drank in under 5 minutes. Things got messy real quick.  And, when you've had three kids who took great pleasure in kicking the crap out of your bladder while they rented space from you for 9 months, you can't just stop what's already been started if you get what I mean.  In simple terms, what goes in, must come out, except of course for starfish with daggers  AND  they should really make bigger hats for those of us who like to do a job right.

I wonder what is in store for me tomorrow!! I can hardly wait.  It feels like Christmas.  The anticipation is killing me...or maybe that's the Lupus talking.


Tuesday, May 19, 2015

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 tonight.

They also discovered today that I have Adrenal Fatigue.  Never heard of that but apparently, it happens to people who live in a constant state of stress and chaos.  I take offence to that.  I honestly thought I was handling my life just fine.  Really.  I'm not being sarcastic.  All things considered, I thought I was doing okay.  Labs say otherwise.  So, I will be on some form of steroids for up to three months.

I decided to go with the Anti Malaria drug for the Lupus.  I start tonight.  Wish me luck.  When I picked it up at the pharmacy tonight, the Pharmacist was explaining the side effects...they are basically the very same side effects that Lupus causes!  Makes so much sense to be on a drug that mimics the very disease that is killing you!  (Said no one ever!)  But, I feel resolved that this is what I need to do to at least get things calmed down.  After I get on top of the pain and such, I will hit the Natural stuff and diet hard.  Until then, one step at a time.

Depending on what tomorrow brings, I may go back in for more anti inflammatory shots in the morning.

For my own situation, I am doing okay.  I feel like I am being an odd sort of way.  I am being blessed by knowing when I need to stop and rest.  When I got home from the hospital, I slept for an hour before going to work.  Normally, I would have pushed myself so...this is progress.

In my prayers, I've been asking Heavenly Father what I am to do about my jobs and what kind of work I can do, will be able to do consistently.   Today, I got three new drafting jobs.  One could actually be a more permanent situation working for an Architect in Bozeman.  They said if it works out, they will make it worth my while so that I can upgrade my CAD program.  That's going to cost me upwards of $2000.  I also got a call on a new custom home design job and a twin home design job.

I don't know how I will be able to take this all on but I have Faith that God will make it happen.

Tonight, my biggest weight is for Alisa and her most loving husband Josh and their three young sons.  Alisa was only 36!   I can't imagine having to leave my kids no matter how old they are. She is a brave girl.  I know the world, especially her family is feeling a void that probably feels like nothing big enough could ever fill that emptiness now that she's gone.

I want to wrap up this post with my new favorite poem and dedicate it to Alisa and her whole extended family.

"Gone from my sight" by Henry Van Dyke

I am standing by the seashore.
A ship at my side spreads her white sails to the morning breeze
and starts for the blue ocean.
She is an object of beauty and strength,
and I stand and watch
until at last she hangs like a speck of white cloud
just where the sun and sky come down to mingle with each other.
Then someone at my side says, ‘There she goes!
Gone where? Gone from my sight – that is all.
She is just as large in mast and hull and spar
as she was when she left my side
and just as able to bear her load of living freight
to the places of destination.
Her diminished size is in me, not in her.
And just at the moment when someone at my side says,
‘There she goes! ‘ ,
there are other eyes watching her coming,
and other voices ready to take up the glad shout :
‘Here she comes!’


Monday, May 18, 2015

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 kidneys are struggling a bit, I am taking on water like the Titanic.  Seriously!  I've gained 7 pounds in under a week. My red blood cells are dropping, my white cells are petering out and I have never experienced fatigue like I have the past week or so.

It explains my clogged tear ducts, my deformed and useless thumbs, my incredible back ache and all the other ailments I have had the past little while.  Lupus is making my Ankylosing Spondylitis go crazy so I am one miserable person in a ton of pain.   Today, I woke up and couldn't move my neck!

Lupus, at least what little I know of it is like a mystery.  You never know what you will be feeling from moment to moment.  It's a big surprise!  One day, I feel nauseated and dizzy.  The next day, that's gone but my knee burns in pain.  One moment, I feel like I have a raging fever, the next minute it's a hot flash and my insides feel like they are burning up!  The one constant is the brain fog and the fatigue. I hate it.  

Finding out I have Lupus was a perfect opportunity...

To thank God it wasn't cancer.
To get some practice perfecting my faith.
To be my own guinea pig and practice the things I studied about nutrition and healing.
To trust that God is not going to let me down.
To get my life in order.
To realign my priorities.
To take better care of me.
To understand what my kids feel like when their blood is so low.
To figure out what really makes me happy in life.
To find a new job.
To be brave.
To be an example of hope, faith, trust in God for my kids.
To live.

Yes, it's going to be hard. Not just the disease but keeping my attitude in check.  Tonight, I'm so worried about how I'm going to keep working.  Cleaning is hard when you feel awesome!  It's a lot harder when your body isn't functioning.   Tonight at work, I had to sit down multiple times to rest.

 The biggest learning curve is going to be giving in when I want to keep going.  I'm a go-getter.  I'm not use to sitting around feeling miserable.  I'm not use to feeling weak.  I'm use to taking care of everyone else, not myself.

I will say this, and it's going to sound selfish because I am selfish, I make a better caregiver than I do a patient. I don't know how my kids do it.  It's much harder facing difficult health crisis that threaten your mortal existence than to be the one looking on and feeling fine.   Much harder.  I have a renewed reverence for my children.

Well...I'm tired and I'm sad but life goes on.  I am going to face this with hope and faith and a proactive attitude.  Thankfully, I'm going into this crisis moderately healthy.  I have some bad nutritional habits but I'm not overweight, and my bad habits are not so bad it won't be hard to make the changes necessary.  I'm actually starting to handle the apple cider vinegar better...that's a blessing.

I know this is going to sound crazy, but I know this is God's way of preserving my life.   More on that later.  Time for another nap!   I wonder if I could get paid to sleep because I'm really excelling at lately!


Sunday, May 17, 2015

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 I still like to take care of them with food and treats and rides to the store.

My Wasband and I took the kids out for an early dinner on Thursday then met up with the cousins afterwards for the movie.  After the movie, we went back to my Wasband's house for cake and ice cream.  Sam also had a surprise visitor from a lady friend who brought him his favorite- blueberry muffins!  She's a cutie but they are just friends!

Sam doesn't ask for much, in fact the only thing he's been talking about for a year was to have a surprise party.  We actually pulled that off with the help of a couple of Sam's friends.  Friday, we had pizza, pop and more cake and treats.  The kids swam, watched a movie and hung out.  

Here are the pics from this years celebration
Cake and Ice cream at Dad's

Cousins Conner, Justin and Kristen

Kristen and her soon to be husband Aaron

The Birthday Boy

Dad and Sam


Shelbie and her friend Kristy.  


Sam is way into the 80's so I got him a record player and some vinyl!  He was so surprised.  It's going to be fun collecting more vinyl.

This time next year, Sam will be sending in his papers to become a missionary for the Church Of Jesus Christ of Latter-Day Saints!  I can hardly believe it!

Thursday, May 14, 2015

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.  I wish I had a picture of that x-ray, it was pretty shocking.  You normally have a small space between each joint and mine is totally gone, no space, just bone. The doctor ran some blood work to see if we can figure out what is happening.

I left there pretty upset because he asked me to take a couple of weeks to a month off from work to give my hands a break and see if we can get things to calm down.  That would be an impossible feat! As a single mom, it would be completely impossible to not work for even a day!

I tried not to worry.  I tried to stay in the moment and do what needed to be done.  I worked.  I worked but I promised him I would keep my thumbs immobilized.  Try doing ANYTHING without using your thumbs.  I may as well just be a dog!

So, as if that wasn't bad enough...last night, the nurse called with test results.  It's not looking good folks.  All my blood counts are pretty low, below normal kind of low.  My red blood cells are low, hemoglobin, hematacrit, white cells...there is trouble brewing.  I'm kind of freaked out!   Even my kids have better counts than me at this point!!!

The nurse said he didn't want to say yet what he thinks is going on.  He sent away for more testing to find the source of the problem.  Generally speaking, we are looking at anything from Lupus to Cancer.  I don't want either or anything in between!!!  I need to be here for my kids!  

Now we wait...maybe til Monday!  Arghhh....I love waiting and being patient.  It's one of my best qualities...SAID NO ONE EVER!!

The only positive thing I can find to say about this situation is I'm glad I'm not crazy and the fatigue and general feeling of being unwell is not all in my head.  If you don't have enough blood, you're not going to feel so hot!

This morning, I started my strict alkaline diet.  Bleh!  For breakfast, I had a glass of baking soda water, a glass of apple cider vinegar and a smoothie of fresh strawberries, pineapple and water.  For lunch I will eat lettuce and for dinner I will hit up some more lettuce with a cauliflower chaser and then another glass of baking soda water and finish the night with a snack of pure, unadulterated lemon juice.  I may as well just squeeze it straight into my mouth and not dirty another cup!  When I'm not indulging in such amazing culinary wonders, I will be drinking 70 ounces of water and some Vitamin C and Magnesium.

I have to get better!  I have to shake this off, whatever it is.


Tuesday, May 12, 2015

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.  There will be people who will say, "Well, that's to be expected" but to me, it's most unexpected.  Maybe I have hope to blame for that. I hold on to hope, hold out for hope, hold hope against what could be. It's hope that makes all the bad things that happen so very unexpected.

It was also unexpected that in that moment, I felt just holiness and reverence for Alisa and her husband.  I feel like I am losing my best friend but the truth is I have only met her once.  One very special moment in Seattle.

It was unexpected that in that moment, I wanted to jump in my car and drive down to Utah to say goodbye and tell her how amazing and wonderful and inspiring and honest and perfect she is. I want to see her one more time before she goes Home but I am just a stranger on the side of her blog.  It was a most unexpected feeling.

Today, I felt more of a struggle with my own setback in health which I have yet to report here. The news of what I am facing was most unexpected on Saturday.  I'm still trying to process it all and wait patiently for more tests to come back.

Today was suppose to be a day to get myself caught up on some things but instead, the most unexpected things happened and I scarcely know what to do with myself.


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 divorce anniversary.  It's a big ball of dysFUNction.

Ya, I pretty much hate Mother's Day.  Pretty much, it's a crummy day and has been for the past 10 years at least!   I had planned to do nothing and told my kids not to worry about it.  We went for a quick lunch on Saturday and I thought maybe we should just call Mother's Day, Kid's Day.  I mean why not?  Without my kids, I wouldn't be a mother.  So, I presented that idea to them at lunch and asked them what the best part of being a kid in our family was.

I thought I might get some fun memories, endearing moments...nope.  Apparently, all they could come up with were the 8 months in 23 years that weren't the best!  So, Kid's Day didn't last long.  I finally suggested we just bag it all.  When you don't have a husband cueing the kids and orchestrating something, nothing is really going to happen.

We left lunch and went our ways.  Shelbie and I both had to work and Sam had activities planned with his friends.

Sunday, I was determined not to let the day be awful so I decided the best thing to do was serve my kids.  Do something motherly.  Feel gratitude that I have kids to serve still.  So, I made them breakfast in bed and then a nice dinner that we all enjoyed, their dad too.

It wasn't the best day ever but it wasn't the worst either and that was nice for a change.

I can't believe I have been on my own for 10 years.  That's crazy!  I didn't even think I would survive one year let alone a whole decade.   I can't even believe I survived this past week!!  Ha ha.  My next post will be all the drama that packed itself into last week!

Anyways, as it goes, my kids bought me flowers, a funny card and a gift card to Dairy Queen.  I love them and love being a mother.  I haven't been stellar at my job of mothering but I can honestly say I've done my best.

A little sign I made for them

Breakfast in bed.  Strawberry, Nutella, Banana crepe for Sam and a Bacon, Egg and cheese sauce crepe for Shelbie

A little something from my kids. 
A big shout out to my own mom who may not think she did a great job either but she did!  She's awesome!   Happy Mother's Day!


Saturday, May 9, 2015

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 doctor's appointment, I found this website that converted your name to your Leprechan name.  Mine came up as Stumpy McNuckles.  It stuck.

I mean it really stuck.  There is no getting rid of this name.

My kids even changed my name in their phone from MOM to Stumpy McNuckles.  If they ever get in a car crash and the police find their phones to call me, they will have no clue who their mom is.  They will never think to call someone with the name of Stumpy.

When they are with their friends and I call or text, the friends are very confused when they see my new name come up.  Now, their friends call me Stumpy.

Last night, Shelbie brought a boy over for the first time and her friend was with them.  When they walked in, Shelbie and her friend hollered up, "Hey Stumpy, we're home!"  

I peered over the railing from the loft and said hello.  I could see this young man's face and he wasn't sure if he should laugh or say hi.  I eventually set him straight on my real name.  I don't think I look anything like a Stumpy McNuckles.

It kind of makes me laugh when my kids call me this.   I guess it's better than Horace.  That is the name they have for their dad.  I'm not entirely sure where that name came from but Horace it is!


Friday, May 8, 2015

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 week.  I was excited to get started!  Super excited!  Just the thought of actually thriving for once was such a wonderful thought.   But then...

Well, doctor's happened, lack of money happened, more jobs happened, a small flood in my laundry room and basement happened...and here I am on a Friday night, not quite sure I will SURVIVE the weekend!

I signed up to paint an office.  A huge office!  I was hoping it would pay really well so that I could get some credit cards paid off.  Well, it's proving to be extremely time consuming!  It takes all the spare minutes I don't have!  Ugh...

Tonight, I had hoped to wrap up early so I could catch up on my first week of Thriving class but no such luck!  

Someday...someday...I really hope I figure out how to thrive!  I'm tired of just being a word I flirt with when I dare to dream.  I word I crave and hunger after.   Until then, I will just cram myself with another sturdy helping of survival!


Thursday, May 7, 2015

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 surprise me.   There was a part of me expecting the scans to be clear.  Now we know.

Even though there isn't anything we can do about it, there is some peace in knowing.  

Pulmonary AVM's aren't typically associated with DC but since DC is so rare and the database so immature, it isn't mentioned as a complication.  However, it doesn't take much digging to find studies on DC kids who have multiple, PAVM's.  The research is new, very new so it will take some time I'm sure before it becomes an official symptom.  Not only is it in the research but in my support group, there are several DC patients with AVM's.

Dr. C was really pleased with the way Sam has responded to the steroid inhaler.  He is doing much better with his breathing so we are going to continue to treat Sam in that way.  The doctor mentioned how amazing it is that Sam can do the things he does under the circumstances.  I agree, he is incredibly blessed!   It hardly makes sense in fact!

For Shelbie, he really wants her to start Pulmonary Rehab.  Three times a week for up to 36 visits, she will go to the hospital in the City for monitored exercise so they can see how her lungs and heart do with the added 'stress'.  I think it will also allow her to see where her limits are and what she can actually do before getting into a 'danger' zone or a place where it will be too taxing on her lungs.  That's how I understand it anyways.

Getting bad news isn't so bad when you have confidence in your doctor.  I was really afraid we would have to start all over in Seattle where there would be a doctor who could handle all these rare problems.  I have complete confidence in Dr. C.  I know if I got worried or panicked about something, he would be able to listen and help me sort things out.  That makes me feel so much better about things.  I'm so glad he was willing to take the time to get to know our disease.

The only other thing he cautioned us about was the fact that the kids have had way too much radiation.  More than any normal person should have in their lifetime!  So, he said, "NO more radiation at all for at least a year."  The reason for this is because of the kids' cancer risk with DC.  It's really risky.   I've known this but we really had no choice but to get this testing done. we try to move on from here.


Wednesday, May 6, 2015

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't even seem possible when I think about where we have been and where we might end up.

There are so many sick kids right now with both Shwachman Diamond and Dyskeratosis Congenita.  So many DC kids who have had bone marrow transplants, so many getting ready for transplant.  It's hard not to wonder when it will be our turn.  When the other shoe will drop.  I know I shouldn't go there is what it is.

I guess all this is coming about because today...we see the pulmonologist.  Will Shelbie have Pulmonary Arteriovenous Malformations?  It's anybody's guess.


Monday, May 4, 2015

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.

My remote office for the day.  Nice enough.  

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.
"No reason."  She said...

When she came out the third time, I kind of started laughing in anticipation of her next question without a reason.  This time, she said, "I just don't want you to worry, everything's fine.  Your daughter is doing great.  The cardiologist is going to get a larger scan of her lungs."

I was back in this private waiting area but there was one other lady there who then said, "Oh, your little girl is having testing done?"

"Yes, but she's not very little, she's nearly 23."
"Oh...the nurse made it sound like she was doing something really hard and just a little girl."

The whole day was weird!  It took the entire day!  We went straight home from there so I could get to my night job.

We won't get results for a week or two.  This week though, we see the Pulmonologist about the CT scans the kids had last week and to see if Sam's wheezing is doing better since being on steroid inhalers.

I guess the blessing lately is that I have been so consumed with other work and other details to figure out in life, I haven't even had time to think about what is happening to the kids.  Every now and then, the anxiety bubbles up to the surface but I get quickly distracted.  Honestly, the break from thinking has been kind of nice.  

I feel like Wednesday is going to put an end to this chapter of heart and lungs.  Not that we will have definite answers, or maybe we will but certainly not a plan to cure anything I'm sure.  I still like to think that everything is going to be fine but I've thought that before so it's better to keep my mind a blank slate and let whatever comes...write the story itself.  Easier said than done.