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Showing posts from January, 2012

What a road

This bumpy, dusty, desolate road of Shwachman Diamond Syndrome has been no picnic the last little while.  I need to a runaway truck ramp or better yet a rest area of some sort.

The past several months have been harder than usual.  I have been struggling with depression, something I have been able to avoid for many years but now, I find myself trying to hide that and keep a happy front. (I guess the cat's out of the bag now!)  So many times in the last week, I have been reminded that we are too big, too overwhelming and unbelievable for some people to handle, even some medical providers.  In a moment of weakness, I let my guard down and let out a little more emotion than usual.  They didn't like it. They let me know in no uncertain terms that I was annoying them.  "Gosh, I'm sorry, please accept my apology for sharing with you some of my worries and expecting to get a little emotional support." Silly me.  Silly genetic problems.

 My kids need to see their happy m…

Liar, Liar

Well, now I know where I kids don't trust me!  After all I've done...
Spencer spent Saturday snowboarding.  It has become his usual weekend activity and my day to stress and worry and therein, lies the problem.  I try not to and I have gotten better in the recent years to not worry so much about my kids but it's a learning curve that is pretty steep. 

Spencer came home Saturday night to get some things.  When I heard him open the garage, I was excited to see him.  I greeted him at the door with a hug and kiss.  I asked him how his day was and this was his response...
"Hey, what's left on our insurance deductible?"  This sounded fishy...He made up some story about Shelbie asking him.

I didn't believe him so I texted Shelbie, she had no idea what I was talking about so I called Spencer on it.  He said he was just kidding around and wanted to tease me.  That was not a funny joke and I knew he was up to something so I kept pressing for informatio…


Shelbie's transfusion last week ended up being pretty rough.  I am starting to develop a theory on the side effects.  It seems when her counts her low, the side effects are bad.  When her counts are higher, the side effects are manageable. 

We spent the weekend just trying to manage pain, extreme pain that even affected her eyes.  I was constantly rotating ice packs to wrap her head in.  She couldn't sleep so that meant I was pretty much missing out on some zzz's as well. This week, it has caught up to me and I am wiped out. It seemed like every hour I would say to her, "Let's just get through this hour.  If things aren't better in one hour, we will go to the ER."  Surprisingly, things would ease up and she could muscle through. A few hours later, I would play the 'hour' card again.  We were able to avoid the ER which was great.

Last night, she finally turned a corner and today has been a good day for her.  Sam on the other hand...

Sam was awake…


While I was laying on the Hidascan table getting the scans of my gallbladder, the technician asked, "Do you have any stress in your life?"

  "hmmmm...let me think...No, nothing I can put my finger on. I don't have much to be stressed about." was my response, completely tongue in cheek.

  He took me seriously though and said, "Well, that's good. You don't need stress compounding the problem."

"Ya, for sure, that would stink." Inside, I wasn't sure if I should cry because not a second goes by that I don't feel stressed and worried or if I should laugh because the question itself seemed just so trivial and trite compared to what I am dealing with.

Oh well, for you fellow people stressed, stop that and check out what stress can do to you! Yes, I'm pretty much doomed.
Source: via Lori on Pinterest

IVIG 2012

What a day!  I was told it could be two weeks before Shelbie would be able to get her IVIG because of communication problems between the hospital, nurses at the oncology clinic and our insurance company.  Apparently, our doctor was unaware of the situation because he kept getting misinformed so when I called the office in a bit of a mood on Thursday, he finally realized there was a problem. 

He spent the early morning hours Friday, arguing with our insurance company and by 10:00am, he had convinced them to authorize one IVIG treatment and we will need to continue the fight for more.  Our doc wanted to see Shelbie before going to the hospital which was good because she has not been feeling well.  After a thorough exam it became clear that she has other problems brewing. 

Her counts were really low and she is pretty neutropenic meaning her white count and immature white cells called Neutrophils are low as well.  She is still fighting the same Adenovirus that she got last JULY!! Yes, t…

But, I'm the mom!

Today has been a very hard day as I come to terms with how hard it has been raising my kids with Shwachman Diamond and all the other problems they face.  The realization of this hit me in the strangest of ways. 

I am a baby.  When I feel out of sorts or sick with anything other than the usual cold or flu, I get really anxious.  I'm not sure why but I think it may have something to do with the fact that I am the mom.  I am the caretaker, the caregiver, the housekeeper, the cook, the psychologist, the PA, the go to girl, the resident, kiss is is all better, the one who keeps the train on the tracks, I'm in the bottom of the boat, working the oars and straightening the deck chairs.  Not to mention, I am the breadwinner regardless of how small and stale the 'bread' is. 

Tuesday, I developed a really bad pain just under my ribs. I tried to ignore it.  By Wednesday, it was really bad, a nagging pain I couldn't get away from and then a bad headache started and I am not …


So, how do you like the new banner?  To me, it feels like a breath of fresh air.  Last year was a year of chaos and stumbling from one crisis to another.  By the time December came, I wasn't sure I was going to make it to this year without a new, white, slim fitting jacket with extra long sleeves and silver buckles!  Yes, I felt like I was going crazy!  Most days, I am still crazy, some things will never change but I feel like I have a little more breathing room. 

Life is hard.  Life is harder with Shwachman Diamond Syndrome and Mitochondrial Disease and Secondary Immune Deficiency.  Really, when I think about it, nothing has changed physically from December to January.  We are still preparing for Shelbie's infusion this week. For the last several days, she has had inflammed eyes off and on, sore throat, cough and some GI issues but it has all somehow melded more seamlessly into the day.  Sadly, it has become like a weather report we hardly pay attention to.  That sounds rude…

Little Reminders

I have been spending alot of my time lately reflecting on the past, the very distant past.  There must be a reason for my pondering though I'm not really sure about all the 'whys' of it yet.  It's kind of like those days when you think about an old friend and then the next day, they call!  Everyday, a little thought, a phone call, a story, all reminding me of where I've been. 

When I was born, my hips were dislocated in a bad way. Congenital Hips, they called it.  My little baby legs were turned almost backwards.  I was put in some pretty funky braces and then my parents were told the odds of me ever walking again were slim.

Earlier this week, I was helping Shelbie with some things in her studio and found a tote box back in the corner of the basement, sitting all alone.  I opened it up and there on the top were the braces I wore as a baby.  They look more like instruments of torture.  I guess in a lot of ways they were.  They had the foreboding task of turning my …

A Bit of Everything

You know when I don't post for a week or so, things are okay or at least status quo.   I hate to say how much I love the break from health problems because whenever I mention how quiet things are, you know what hits the fan and I end up eating my words.  I would rather not nosh on that!

All in all, I can't complain.  We have had the usual issues like daily nausea, extreme fatigue and Shelbie is fighting an eye infection and cold.  Not fun but the infusion is coming soon so that will help.   Spencer's petechiae has cleared up and were able to avoid a big infection with the help of fast acting antibiotics.  He is still trying to think of a Wish and the deadline is ticking for him to decide.  I think the wish granters will be coming by in a couple of weeks.  We decided to wait until after the holidays and one of our sweet wish granters had surgery yesterday so I thought we should let her recuperate before getting to work on behalf of Spencer.

We started this year with a posi…