Skip to main content

Bits and Pieces

I feel like so much of life is just a do-over.  It's hard to stick to anything very successfully.

The FODMAP diet the boys are suppose to be on...Ugh...I was off to a grand start just before Thanksgiving and thought it was going to be so great but it wasn't.  Spencer didn't have his heart in it and in order for this to work, there has to be some level of commitment besides me as the head cook.  
A few days ago, after being oh so sick, Spencer decided he needed to seriously try the diet.  So, we started again.

And again, it's not the easiest thing in the world.  Why is it that gluten makes everything better? Gluten even has the power to make a bad day better.  Without gluten, bad days remain bad days!  Just kidding.  Seriously though, life is better with chocolate chip cookies but those are not FODMAP approved.

Here we are, a few days into it and there is no change in Spencer's health.  He is just as sick after every meal even without sugar, gluten or dairy.  I have a bad feeling that nothing is going to help.  I can't imagine what it feels like to be him.

Shelbie had her transfusion this week.  It took 8 hours!  Next month, when he bumps the dosing again, it's going to take forever! I don't even know how the nurse will be able to come and stay for as long as she is suppose to.  I feel very confident in doing this myself, even taking vitals every hour but still, that's going to be a big ol' day and at this point, the insurance company insists that a nurse is here.  She had another reaction last night, this time a fever.

Out of the blue, I got a call from a new doctor who said they wanted to see Shelbie in a couple of weeks.  The new doc specializes in autoimmune diseases.  That ought to be interesting for the whole family!  Spencer's eye is getting bad again from his autoimmune problem.  Poor kid can't seem to catch a break.

I have an interview for a new job on Monday in the city.  Like any job interview, I'm nervous and not sure I will be able to do it.  This is not the job I was expecting.  I applied for it over two months ago and sent in my portfolio and even  heard back that he was impressed but that was it.  I had written him off because he said he would work out a time to meet but that was the last I heard from him.  His call today was surprising.

I'm not sure what the job pays or any details but it would sure be nice if I could retire some cleaning work.  I hurt my shoulder a week ago and I have been in some serious pain, so much that I can't hardly sleep.  Even a cocktail of anti-inflammatory meds and muscle relaxers only tease and taunt me.   I toss and turn all night, every night.

Last night, the power was out for a few hours from 10 pm until after 3 am.  My house has so many gaps, you can feel breezes in about every room so the -4 degree temps were making things really cold.  The boys hauled their beds down to the living room,Shelbie took the sofa and I curled up on the loveseat and we all chilled by the fireplace talking till we fell asleep. We were toasty enough but the rest of the house had frost on the walls!  The kids said it was one of their favorite nights and I actually got three straight hours of sleep!

That brings us to the end of a long week!



Popular posts from this blog

Some Results

I was surprised to get a brief update from our doctor this morning.

They did not catch any seizure activity last week.  She said that while that may be good news, it didn't rule out deep structure seizures.   I asked if the test gave any insight to the cause of the slowing of activity in her brain and these were her words.

" No, this does not give an answer ... But it is just one test, done one time ..."

We are still waiting on the MRI results.  I'm not losing hope.  I know, I play this game ALL THE TIME...I wish for problems that no one in their right mind would wish for.  I only do that because it's usually the option with a fix.  Of all the things they are considering to be an issue for Shelbie, seizures are the simplest explanation and medication would manage it.

I'm certain we aren't going to find a solution to her problems any time soon.  While I sat in the waiting room during her 2 hour MRI last Thursday, there was a couple in the room as well.  A…

Random Saturday

Whenever I feel like we are careening out of control, I declutter and clean.  By midnight on Friday, I had 1/3 of my living room filled with stuff I didn't want.  Today, I made a couple of trips to the thrift store and the dump.

Ahhh, I feel like I lost 20 pounds.

When Sam came home after his first week at school a while back, he said, "Wow, my room looks the same."

"What did you think your room would look like?"  I asked.


Turkey!  He came home this morning with his laundry and was a bit despaired.  He said, "Mom, you gotta help me with the smell in my apartment!  I can't stand it anymore! Do we have any Ozium?"

He went on to explain that there is no garbage disposal in the kitchen sink but food gets crammed down there anyways.  He said he keeps putting the little metal drains in that are meant to catch bits of food but his roommates take them out.  He's about fed up.  And while he was on his rant about boys and their leve…

A Witness

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

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

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