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Showing posts from 2013

Goodbye 2013!

This is a big day for me!!  Said goodbye to my other blog...Nuttin Wise!  Now all the fun will happen HERE, on this blog!

This is also...

The day this no good, very bad year ends!  I should look back on it with fond memories but mostly, I'm saying....get me the &#*@ outta here!!

Okay, okay...some really good things happened...Spencer is happy serving a mission for the Church of Jesus Christ of Latter Day Saints.  He is so happy!! And, while I miss him terribly...I couldn't be happier!  Sam has grown leaps and bounds and become a really sweet boy that is so helpful and protective of Shelbie and I.  Shelbie is finding herself.  She has been challenged, spread her wings a little more, found some friends who aren't too bad and all that is good!

Let's see...what else good happened this year?  Hmmmm.....thinking.....thinking....give me a second.....

Anyways.  It's been quite the year!

Seriously, we have been blessed in spite of the trials and difficulties.  God has…

Reading my mind

Sometimes, I feel like I am the only one in the world whose tired of disease and problems.  Who feels happy one minute and sad the very same minute.  Who is tired and angry but blessed and hopeful...yes, at the same moment.  I love the letter this mom wrote to other mom's like me...She read my mind but her writing is beautiful and simply stated.

If you have a minute, it's worth the read.


I have had a few inquiries about if I was able to talk to Spencer on Christmas day.  Yes, I was.

Is it okay if I admit that I would have been okay to not talk to him?  I just wasn't sure how I would keep it together and he doesn't like it when I cry!  He had told me he was just going to call, not Skype but then, he ended up Skyping!!

Gosh, to see his face, hear his voice...I lost it for about 10 seconds until he said, "Awwww, mom, don't cry.  I'm so good!"  I pulled it together.

I wasn't going to tell Spencer about the genetic news.  My plan all along was to only tell him if the Doctors in Seattle needed him to do tests and stuff.  I can't imagine anything worse than receiving difficult news in a letter and have to wait a week to ask questions, then another week to get answers.  That sounds horrible and I didn't want to do that to him.

I didn't want to tell him over the phone because I couldn't see his face.  He is brilliant like me...…


The very word alone, sounds an awful lot like 158/95...

Rising blood pressure.

It's an ugly word.  It sounds dissonant, disturbing and incompatible- not to mention, unrelenting!

I had to go to the doctor to get my cardiology tests back times...they had not been read by this afternoon so...I wait some more.  And, waiting isn't stressful at all.

My blood pressure is still high!!! Not cardiac arrest high but the highest side of normal. And, that isn't stressful at all.

My doctor said, "Kathy, you have to get rid of some stress in your life.  You have too much going on, something's gotta give."

I wouldn't have to work another day in my life if I had a dollar for every time someone told me this. And then, maybe life wouldn't be, however, last time I checked, dollars aren't attached to well-intended advice.

So, I ask...How do you get rid of stress?

Is eliminating stress sitting around napping?  Doing nothing? Shopping?… win some, you lose some

Can you tell I have a lot of time on my hands?  So much writing, so many thoughts rolling around in my head and I am in Heaven!  Nothing makes me happier than writing! is Christmas Eve.  Tonight really.  Here I sit at the computer.  It's always a time to reflect on much!  The Saviour, the blessings, the trials, everything!  Earlier today, I was thinking what a treasure it was to have a day without sickness, drama, doctors, hospitals...I was relishing in the peace! Not even 5 minutes after that thought...I heard screaming!

They weren't screams of joy and excitement like...Santa's coming!  It was screams of pain!  I went running downstairs to find Shelbie on the floor crying in pain.  Her knee was locked and she could not move!  I tried everything I could to get that leg straightened; massage, manipulating it.  Finally, Sam and I dragged her to the couch and got her up at least on a more comfortable surface.  I got her some ice, a brace and offered her some A…

Timing is everything

Today, Sam had his appointment with the Ophthalmologist.  It was weird how this appointment came to be.

About 3 weeks ago, Dr. Fullmer's secretary called me to say that Dr. Fullmer wanted to see Sam.  She called at a really busy time and I was sort of caught off guard by it all but then thought I had just heard her wrong and went ahead and scheduled the appointment for him since it has been over a year anyways since we saw him last and Sam's eyes have been having more issues with the vision loss.   I still didn't recall ever being on a 'schedule' with ophthalmology like we are with Oncology and GI as far as quarterly visits go.

So, today we go in and every minute was a surprise!

We discovered a couple of years ago, during some mitochondrial testing that the kids have a genetic defect called LHON.  It stands for Leibers Hereditary Optic Neuropathy.  The gene causes total blindness.  Blurred vision begins and within 2 weeks, the vision is completely gone, never to re…

What next?

Thankfully I survived the weekend!  I had three more episodes with my heart; not as severe but definitely uncomfortable.  I went back to the hospital at noon to get the monitor off and back to respiratory therapy.  They claim that they will have it read by the cardiologist tomorrow but I'm not going to hold my breath.  I don't think many people are working this week or will at least have limited hours.

The more I think about it all, the more I wonder if it doesn't have something to do with the phlebitis I have been dealing with since September.  Late this afternoon, my ankle started acting up and it was so painful to walk, again!! Now the pain is all the way up my leg and so uncomfortable.  I guess I'm just falling apart!  I wish someone could figure out all these strange things happening to me.  I guess it could all be stress but that is such a hard diagnosis to wrap my head around.

Saturday night, I got a whopping 1.5 hours of sleep!  Bentley, the dog tore open a gif…

Rhythm and Blues

Last night, I was not expecting to end up in the emergency room...with myself!

Sheesh!  It was a bit dramatic to say the least.

I work nights now so I headed to work about 6:30.  The kids were all headed out to their evening activities.  Work was pretty much uneventful at the clinic where I worked; cleaning toilets, mopping up smushed cheerios from the reception floor and other manner of evil I dared not guess what it was.  Vomit?  Smoothie juice?  Mysterious.

I was back in the reception area vacuuming and all of a sudden, something caught my breath. It happens rarely and it usually makes me cough a couple of times and then everything is fine.  I coughed but I could still not catch my breath. I could feel my heart racing and by racing, I mean, it was zipping along!

I was a little worried but I stopped vacuuming and walked around trying to take deep breaths and think of warm, sandy, Caribbean beaches.  I tried to shake out the tension in my neck but my chest was tightening up.  I did …

Hard Places...Holy Places

I can't believe we don't even a have week under our belt yet from getting the life changing news about the gene!  It seriously feels like 8 weeks should already be over!

One week ago, it felt like Christmas, the air was infused with that Christmasy feeling.  One of the many versions of 12 days of Christmas seemed to play in a continuous loop wherever I went.  That, fluttery, excited feeling was settling in.  Packages had been sent, a package arrived. Shopping was done and I was determined to settle in and enjoy the sights and sounds of the season.

Nearly a week later, I am in a different place.  I don't recall hearing any Christmas music for days though I know the station on the radio is still set in my car.  I don't smell the fragrance of cinnamon and pine.  I don't feel excited like I did.  The Christmas lights seem to have lost their sparkle. I did some baking on Sunday but it was merely going through the motions; a task to be done.

I feel numb and extremely e…

A Veritable Buffet

Holy Smokes what a day!

This whole deal is a like an all you can feel buffet!  Not even kidding.  One minute, we feel just normal, then the next serving is overwhelm, then panic, a sprinkling of joy here and there and the whole course is wrapped up with a big plate of intrigue!  And then....there's the crazy stuff that just never ends!  And then, there is the fact that my brain is completely, totally fried.

Today, Shelbie had to spend the afternoon at Mountain View Hospital in the city at Ortho clinic.  Before we headed down, we had to stop at the  hospital here to pick up her MRI stuff from two weeks ago on her knees.  The front doors were locked and staff was directing hospital visitors through the emergency entrance.  There was a press conference going on announcing that our local county hospital would be partnering with University of Utah Hospital to bring more specialists to our town!

As soon as I heard this, I knew without a doubt that God is moving people and resources int…

Holding patterns

Today, we find ourselves in a holding pattern.

It's not that I dislike holding patterns, their pretty benign, but I am anxious get going on this testing.  The sooner we start, the sooner 8 weeks will be here. The sooner we can discover what the future has in store for us.

I have spoken to our Oncologist here in town and he is just waiting for a couple more things from Seattle before we can proceed.  He told me that Shelbie would also be involved in the testing which came as yet another surprise.  I'm not sure what that means really since she definitely said Shelbie did not have the gene for the new disease. Who am I to argue.

Another holding pattern we have experienced today is getting Sam's bone marrow report back, at least the preliminary look that measures the % of functioning cells.  He is pretty much in a holding pattern in what they call the cellularity, as he was 6 months ago so 20% give or take a white cell or two!

When I stop and consider what 20% really means.…

Breath of Heaven

Without a doubt, it has been a pretty crazy couple of days.  I have been asked by many how we are doing?  I'm not really sure how to answer that question.  It changes every hour, literally, every hour I feel something different.

Friday was just about getting through the day. It was about waiting for our doctor to call and get things started.  It was about just trying to keep the tears at bay.

Yesterday was different.  Yesterday, I wanted to feel peace. I needed to feel peace.  I prayed that I would feel peace.  Yesterday, there was more peace.

Yesterday, I sincerely felt Heaven and a host of angels lifting me up.  The breath of Heaven I wanted so badly to feel, I felt.  It came in many forms, some unexpected but it came.

It came in the box of presents that appeared on my doorstep late Friday night.  It's not the presents that touched me but the fact that each of the 12 gifts had a tag with a thought written on it.  Little reminders that there is a God.

It came while spending…

The Grey Matter

I am still a little in shock but mostly I am feeling guilty.

I know there are a dozen or more mothers who wish they were the ones who had gotten the call that a gene was found for their child. I know that for years and years, I thought I wanted to know the gene that was causing all these problems.  I thought I wanted a name, a place to hang our hat, call it home and settle right in to the business at hand. A dozen or more mothers are happy for me, hoping for the same great news. For this, I feel guilty.  Maybe it should have been one of them to get this news, one of them who was ready and really did want answers.  Instead it was me.  I don't even appreciate the 'gift' I've been given.  It's not that I don't appreciate all the time and hard work of a superior team of doctors, I certainly do but maybe I needed a little more time to mull over the effects of finding the gene.

I never realized until Thursday, just how much I loved being in the grey area.  Limbo.  N…

Upside Down...Inside Out

This week marks another anniversary.  The anniversary of our Shwachman Diamond Syndrome diagnosis. 14 years we have lived in the realm of SDS.
14 years of trying to get 'use' to life with SDS
14 years of heartache
14 years of worry
14 years of not knowing what will happen next
14 years of trying to be heard
14 years of isolation
14 years of people thinking I have made all this up
14 years of doubt
14 years of being a fish out of water
19 years of bone marrow biopsies, countless hospitalizations, life flights, ambulance rides, chronic infections, mysterious illnesses, more disease, more doctors than we can count on two hands!
21 years of research, never sleeping, spending every waking moment with my kids, celebrating every 'first' with more vigor than the average person thought was necessary.
21 years of puzzles, head scratching and being accused of all sorts of things including, but not limited to Munchhausen, starving my kids, lying, making things up, convincing doct…

State of Confusion- Part 1

There is a lot going on around here by way of health problems.  Earlier this spring, the kids were all diagnosed with Hypermobility Disorder.  With more learning, I came to understand that this is not just being super flexible, it's a collagen defect.  Without adequate collagen, our entire body suffers; joints, arteries, veins even your organs.

Hypermobility falls into the spectrum of the disease call Ehlers Danlos Syndrome.  I have been spending every spare moment trying to understand this disease.  It causes the veins and arteries to get lax and blood leaks out.  Without collagen, the cells walls are weak.  A person with this part of the disease is at high risk for strokes, hemorrhaging, even organs hemorrhaging which obviously leads to immediate death.

Now...don't get lost...It will all connect...

I have talked about some issues I have been having like crazy lumps that have started covering my legs but mostly they cluster around my joints in my legs; knees, ankles...remem…


Shelbie finally got in for her MRI on her knee yesterday and we got results today.  Three doctors all said she had a bucket tear in her meniscus.  They told me the MRI was just a technicality because they would need it for surgery. It was hard to believe she had a tear when she hasn't done anything that would really cause a tear.

Regardless, surgery is where our minds settled and came to terms with, since three doctors were so sure and all agreed on the diagnosis.

Well, it's not torn.  The radiologist said she has unspecified cartilage abnormalities.  Who on earth knows what that means?

All we know now, is that she has to see an Orthopedic surgeon next to figure out what in the world is going on.

Today, she came to help me clean a medical clinic.  When we arrived, two of the docs were still there working late.  Shelbie was dusting the reception area and when she turned to walk, her knee buckled and she was on the floor.  This happens nearly every day lately. When it happens…

Fitting us for Heaven

Man.  November was not fun!  Even the last day of November...not fun!

Exasperating.  Discouraging.  Frustrating.  Exhausting...just a few words that come to my mind.

Here are some more.

Isolating.  Lonely.  Sad.  Doing it all...(okay, more than one word but BIG nevertheless), after Sam lost his vision for the morning, broke out in hives in the afternoon, sprained his ankle badly, Shelbie's dislocated hip and frozen knee...again... and just before my 10th nervous breakdown for the day...I realized that maybe this is just God's way of 'fitting us for Heaven.'  I sure hope that at some point, there is a reason for all these rhymes.  I hate rhymes, I hate riddles. I hate doing anything in vain.

Yesterday, we got the house decorated for Christmas, well, the front room anyways.  My house isn't big enough to put decorations anywhere else.  When it was all done, the house was still, the sun had set and the twinkle lights turned our little room into a Holy, Re…

Bone Marrow Biopsy #2

Sam had is second bone marrow biopsy for the year done today!  It was the weirdest thing to walk into the hospital with just one child, not my entourage.  It was weird for Sam too!  The kids have gone through everything together.  He was a trooper and in really good spirits.  He didn't seem nervous.

The nurses at our little county hospital are so great with the kids!  I can't say enough nice things about them.  We had Nurse Nicole today.  Nicole and I go clear back to our college days and I am always happy when she takes care of the kids.  She treats them so kind and has the same kind of humor we do so it's always very comfortable.  She was great to move things along so Sam didn't have a lot of time waiting around to be nervous.

Dr. Hancock was great as well.  He is always so happy and positive.  He is one of the few doctors who understands my desire to research and learn all I can about the disease process and healing things.  I have overwhelmed a lot of new docs la…

Short lived

It seems that whenever I think we were just given a lucky break, it is short lived.

Shelbie's transfusion went so well on Thursday, so amazingly well.  I thought the rest of the weekend would be smooth sailing.  Friday was good and early Saturday was good but then the headache and nausea hit all at once.  Not only that, but she had her knee completely give out Saturday night for no apparent reason.  I ran her over to the Urgent Care and he thinks she has a torn meniscus and something wrong with her ACL.

She has been having knee problems for nearly a year but since I was trying to pretend that more problems didn't exist, I haven't done anything about it.  Well, looks like we will need to have an MRI and stuff.

This morning, I had to rush Shelbie to the ER.  She couldn't move with pain and pressure in her head and neck.  Aseptic Meningitis finally set in.  She had called me three times at church but I didn't hear the first few rings/vibrations.  Then Sam started ca…

Nice for a change

Shelbie had her transfusion yesterday and I was so happy it went extremely well!  It was probably the best transfusion we have had in months and months!

They gave her a liter of fluids this time and I think that helped with all the nasty reactions.  Her blood pressure was stable the whole time and she didn't run a fever or get nauseated!  I can't tell you how relieved I was!  It was still a longish day but that's better than longish and miserable!

Sam is scheduled for his bone marrow biopsy for next Wednesday!  I know...the day before Thanksgiving!  I figured it was a good time since he will have a few days off from school and we usually just lay around stuffing our faces anyways and...I am set to lose my insurance on December 15th...or at least find something in the exchange and that is still a big question mark so I want to get things done sooner than later!

It's a little weird thinking that I am only taking one kid to the hospital for one bone marrow biopsy!  I ha…


Geez, it's amazing what happens when people listen!

It shouldn't take me 4 different doctors before I find one that will actually pay attention when I say, "I am in pain." and dismiss it with a scratch of the head because they really don't want to take the time to be helpful!

I saw my surgeon today in hopes that he would take out this extremely painful lump growing on the side of my tibia, it's about 1 1/2" in diameter.  He won't take it out, it's not safe to but he thinks he knows what it is...Phlebitis!  Bleh!  He said there are no deep clots that he can see yet but if I can't get this calmed down I could get into some trouble.

He did an ultrasound of my right leg and I was shocked to see little cyst like pockets of inflammation all up and down my legs.  I'm talking more than 12!  One cluster had 5 cysts all surrounding my vein!  I don't get it.  I don't understand what is happening to me.  There are at least 8 more starting to…

Survival of the Fittest

This is my mantra for the rest of the week...survival.  It's a bit of an oxymoron because none of us are fit enough to be surviving anything!

Tomorrow, Sam has his appointment with Oncology to get things set up for his second bone marrow biopsy of the year!  How fun.  At least we will be able to stay here in town rather than commuting to Seattle.  It is so weird to me to be doing a bone marrow biopsy with just one kid!  Even Shelbie asked why she wasn't doing one too?  Well, Sam's marrow was abnormal and funky in May so we are checking to see if he is stable, declining or if...maybe....things have resolved!  How great would that be?

Also tomorrow, I am meeting with a surgeon to get one of the lumps on my leg removed (the most painful one) or at least biopsied.  I figure biopsies are a waste of time, if you have to cut me open to get a small piece for the biopsy, why not just get the whole thing out?   I may even be able to have it done tomorrow!  I don't want to spend …

Bone Density

I was offered a free bone density test this week so I was all over that.

They were doing training with some new nurses and I was the guinea pig for them to learn on.  I have never had a bone density test and I have often wondered what is really happening in those hard to see places!

Honestly, I view myself as being 'fragile' physically.  Maybe it's because of the degree of pain I live in on a daily basis and the fact that my hair and nails are so brittle, I assumed that also reflected the state of my bones.  Not only that...but I come from a long, healthy line of Osteoporosis!

I don't really do the things they suggest like drinking milk.  I rarely drink milk unless it's laced with several cups of sugar and a healthy portion of Hershey's syrup mixed in and whip cream on top and a salted caramel drizzle doesn't hurt either!  If my milk was served like that 5 times a day...I'd be all over that!  I'd also be fat!

It was funny because my nurse friend w…

This will never work...

One last story from my hospital visit last week.  I had to have an IV while I was there.  This nurse walks in and I can tell by looking at her that she did not love her job.

She gets her stuff all ready to for the IV and pulls out a catheter from the package.  She looks at it, then looks again and tries to mess with something on the end of the needle with her un-gloved finger. She starts mumbling and she says, "This is never going to work."

I wasn't sure if I should ask her what wasn't going to work because I have veins you can drive a semi tractor through so basically, I could have threaded the catheter myself, or if I should just let her carry on a conversation with herself.  I let her just keep talking to herself.  I tried to play dead.

Then she says, "There's a darn hook on the end of this needle, those never work."  However, despite her convincing monologue, she proceeds to try to thread it in my vein.  She was right.  It didn't work.  In fact…


Sam has had hives for over two weeks now.  Weird.  I thought we had fixed it but they sprouted up again tonight while he was at his gym class along with nausea.

Shelbie and Spencer have battled this in the past and now Sam.  I'm not sure if it is the same thing but it's looking like Dysautonomia is picking up speed with Sam now.  That's too bad.

Next week, he will likely have his appointment to get his bone marrow biopsy set up and we will deal with it then. For now, Benedryl has become his friend.

It will be interesting to see what the doc says and maybe, if the stars align just right, his blood counts will be good enough to safely skip this bone marrow biopsy.  If not, we will deal with it.  At least we will be able to have it done locally and that will be very nice!

The Bind

Last week, I had to spend a large part of the day in the hospital.  Almost 5 hours of testing.  It wasn't fun as you can imagine.  Oh, I just realized, I never discussed the doctor's appointment prior to all these tests.

It's a very long story and by long, I mean, it would take three long blog posts to explain the details and who has time for that?   The short story is, I went to a new Specialist/Internist here in our lovely, too small of a town.  I had heard good things about him and he is fairly young so that usually means they are open minded and since nothing with us is standard and customary, I needed someone who was fresh and eager to learn and not afraid of unusual things.

I went very well prepared for the appointment.  I had a sheet of notes, well organized of concerns I had.  I told him when he came in that I had a 'laundry list' of issues and only wrote them down so I could keep it all straight and not forget anything.  He said, "Great."