Saturday, February 4, 2017

"First and foremost, you are a child of God."

“First and foremost, you are a child of God.” - Elder F. Enzio Busche

Here is a short 6 minute clip.  The words bring peace and hope and love.

Thank you Heather for sending this to me.  

Thursday, February 2, 2017

Why Not?

Hello February! 

So far February looks VERY similar to January, but I am okay with that.

Jeff and I and our kids sometimes talk about, “Why Not?”

(I think this idea originated with our friends, John Matthew and Megan.)

This is how it goes:  Everyone takes a turn saying something that they might want to do by phrasing it with a “Why Not.”  The only rule is that NO ONE can tell you why you CAN’T do it or why your idea is impossible or ridiculous etc.

It is fun to think big, or think differently, or to think your ideas out loud and just maybe put them into motion.

Recently my sister’s family was over and here some of the “Why Not’s” we came up with.
(I will say that this game can be more fun to play with kids than adults.)   

“Why Not”…

(Remember the rule.  You CANNOT tell the other people why their idea won’t work.) 

Jump out of an exploding spaceship while shooting a rocket launcher in space.
Own 5 billion dollars.
Eat steak every day.
Own an elephant.
Get a job as a billboard.
Become a pigeon whisperer.
Fly an A10 jet.
Get a flame thrower.
Actually manage New Year's resolutions.
Get a dog.
Find a cure for death.
Become a plant.
Eat all the Twinkies in America.
Stay up past 9:30.
Beat Erik in ping pong.
Analyze each line of the Divine Comedy.
Major in Philosophy.
Visit Western Europe.
Read more.
Get a cat.
Get a dragon.
Save up for a trampoline.
Travel to South America.
Get a Bugatti.
Go to the beach.
Go to the Farallon Islands to see a great white shark.  
Eat a whole container of Ben & Jerry’s by myself in one sitting.
Organize a comedy night.
Go to the Festival of Colors at the Hindu temple in Spanish Fork.
Plant more flowers in the green space.  
Drive the coast from Mexico to Canada.

Some of the “Why Not” participants. 

Saturday, January 7, 2017

for the love

Festival of Trees is a fundraiser for Primary Children’s Hospital.  It is an event where people decorate and donate a Christmas tree, which the Festival sells, and all of the money goes to Primary Children’s Hospital.   People donate beautiful quilts, wreaths, centerpieces and gingerbread houses which are also sold.  The event takes place the Monday-Saturday after Thanksgiving.

This year we donated a tree. We named our tree “For the Love”.   That phrase can be a cheeky expression, BUT this time it represented all the love and effort that went into it.

When I use the word “we”, there is a whole lot of “WE” that went into making the tree happen. Friends and family that contributed their talents or donated in one way or another include:  Jenn J., Laura, Heather, Andrea, Shelby, Liz, Kindra, Deb, Lynette, Whittney, Jenn, Amy, Dawn, Laurie, Teri, Martin, Louise, Jeff, Claire, Megan, Erik, Kristen, Heidi, Linda, Merilyn, LaKay, Terrie, Cindy, Dave & Dawn.

There were quite a few handmade elements.  Felt embroidered ornaments, jute wrapped balls, moss sticks, hand felted wool fairies and blue eggs, the tree skirt, to the dogwood branch star that my Dad made.  We created a display with tree stumps, lanterns, a toboggan and a gift basket themed after the book, "The Mitten," by Jan Brett. 

Oh let me just show you :) 

The flame in the candle looks real, but it isn't. 

I will be honest. That Monday after Thanksgiving when we finally set up the tree… I never wanted to see another tree in my life.  Never.  Well two days later I found myself thinking, “Hmm, if we did a tree next year what would it look like?” 

Saturday, December 31, 2016

December 31, 2016

In early December I went to a funeral.   At the end after most people had left a woman approached Jeff and I.  She introduced herself and was already aware that I had als.  This woman told us us about a loved one of hers that was diagnosed just over a year ago.  She said how with her loved one, the disease is progressing quickly and he is already in a wheelchair.  She went on to tell me I looked like I was doing well, and added "I hope that we get as much time as you. (pause)  Why do some people get more time than others?"

I glanced at Jeff, not quite sure how to respond, but if anything, her comment seemed to be rhetoric.

We certainly didn’t have an answer to her question.

Goal for today:  Be Present.

Some photos from 2016…

Wednesday, September 7, 2016

I see beauty in all of my friends

Megan has a t-shirt that says:

"I see beauty in all of my friends"

Is it weird that I'm about to post pictures of plants and instead of people?

Shelby, a fellow plant lover would say, "Of course not."

'Friends'  (Thank you Dad for taking these photos)


Friday, August 19, 2016

just some thoughts (and a picture)

An email from a cousin:

Hey Janae!  I am doing a blog post on ways to support, love, serve those who have chronic health problems. I know for a lot of people this is really difficult, and many are not sure what to say or do. They don't want to say the wrong thing but they care. 

I emailed her back with:

Some ways family and friends have helped us:
-          Countless meals (including freezer meals)
-          Grocery shopping
-          Laundry
-          Carpools
-          Visits
-          Girls Night Out (movie, a concert, roasting marshmallows over a campfire, etc)
-          When my youngest daughter was 3-4 years old, a friend took her for two hours every Friday so I could take a nap.
-          Different friends help me with hair and makeup and a friend comes to my house to cut my hair.
-          If I am planning a party or get together, friends make it happen.

(I will add: take me to the temple, take me to plant nurseries, plant the plants, make a birthday cake for my kids, go on walks with me, help me organize my house, help make grape juice from our grapes, help with home and yard improvement projects, read a talk for me in church, include my kids in outings, pick up a slurpee... Everyday there is something.) 

That is a ridiculously short list compared to the amount of help I received.  The kindness of others has been a huge blessing to my family.


Continuing my thoughts here.... (Parts of this are a repeat of what I emailed.)

The other day in church a twelve year old boy was sharing his testimony. One of the things this boy talked about was how even if someone is different from you, you should still be nice to them.

It made me think about how I treat people.  Why do I sometimes feel uncomfortable around someone who is “different” OR someone who is experiencing a difficult trial?  Why am I hesitant to talk to them?  Perhaps I am worried how they will react if I say something.  Will they be upset? Will they think I’m nosey? 

I find myself on this side, knowing someone who is going through a hard time with their physical health, or depression, a concern with their child, difficulties in their marriage, grieving the loss of a child/parent/sibling, losing a job, etc. I want to do something yet I don’t always know what to say or do.

Sometimes it isn’t my place to be involved, yet there are the times the person’s face keeps resurfacing in my thoughts.

When you get that “feeling” to check on a person it might seem random and out-of-the-blue, but God is giving you a nudge towards someone who needs you.  I know that God is aware of each one us and it is through the actions of others He sends help.  Your gesture can be as easy as sending a text, an email, a handwritten note or a treat. Call them on the phone or stop by and say “Hi”.

It might seem like a small thing, but it will mean a great deal to the individual knowing someone is aware of them and cares.  From the kindness of others I know that this is true.

The other part to this was “Why might I feel uncomfortable around someone who is different?”

For me, I probably just don’t know what to say to them. 

Here is a situation for the purpose of comparison I have found myself in:

If you are trying to talk to someone who speaks a foreign language the conversation often doesn’t go far.  You ask how they are doing and other simple questions.  After a while you have both exhausted your limited similar vocabulary, the pauses in conversation are a bit too frequent and you awkwardly part ways.  You genuinely like the other person, but the very important aspect of communication is difficult and frustrating. In the future when you see that individual, you both smile and say hello and perhaps ask how the other is doing, but that’s about it. 

In the past I have been-there-done-that from both sides.

If you are talking with me and you don’t know what I said, just tell me and I will repeat it.  No big deal.  This is much better than you nodding your head and pretending to understand me when you don’t.

One thing I DON’T like is when I ask a certain 14 year old boy to do something and HE PRETENDS TO NOT understand me. Hmmm… But THAT would probably happen even if I had clear speech.

Back to the topic.  It's a two-way road.  There are times when I am stand-offish and do not make it easy when someone is trying to talk to me.  Developing and showing genuine interest in others is something I certainly can try to be better at. 

I love this 14 year old boy, even when he acts 14.  If you don't know what I mean than you probably aren't a parent of a teenager.  (Thank you Mary for the picture.) 

Tuesday, June 21, 2016

als - pseudobulbar affect and a Rx worth looking into

I want to raise awareness of Pseudobulbar affect, because until six years ago I had never heard of it.

First, here is some condensed information straight from Wikipedia
(Oh admit it, you’ve used this site too.)

“Pseudobulbar affect (PBA) is a type of affect characterized by involuntary crying or uncontrollable episodes of crying and/or laughing, or other emotional displays PBA occurs secondary to a neurologic disorder or brain injury. Patients may find themselves crying uncontrollably at something that is only moderately sad, being unable to stop themselves for several minutes. Episodes may also be mood-incongruent: a patient might laugh uncontrollably when angry or frustrated, for example.

“In some patients, the emotional response is exaggerated in intensity… For example, a sad stimulus provokes a pathologically exaggerated weeping response instead of a sigh, which the patient normally would have exhibited in that particular.

“Patients report that their episodes are at best only partially amenable to voluntary control… they often have insight into their problem and judge their emotional display as inappropriate and out of character.

“Such sudden, frequent, extreme, uncontrollable emotional outbursts may lead to social withdrawal and interfere with activities of daily living, social and professional pursuits, and reduce overall healthcare. This may lead to severe embarrassment and avoidance of social interactions for the patient, which in turn impairs their coping mechanisms.

“Pseudobulbar affect is a condition that occurs secondary to neurological disease or brain injury, and is thought to result from disruptions of neural networks that control the generation and regulation of motor output of emotions. PBA is most commonly observed in people with neurologic injuries such as:
traumatic brain injury (TBI)
multiple sclerosis (MS)
amyotrophic lateral sclerosis (ALS)
Parkinson's disease (PD)
Lyme disease  

“A study designed specifically to survey for prevalence found that 49% of patients with amyotrophic lateral sclerosis (ALS) also had PBA. "

I’m back.

I started experiencing this side effect.   For me, while it was not yet debilitating, it was increasingly frustrating to not be able to control my emotions as I had before.     I didn’t know why things were funnier or sadder than they ought to be.   There were times where I would be crying and in my head I was thinking, “What is going on?  This isn’t THAT sad, I have got to get a grip on things.”  I could reason out the situation as it was happening, but I was unable to control it.

In relaying this to my doctor he told me about pseudobulbar affect and recommended that I try Neudexta.

Within a week of going on Neudexta I began to feel more in control and it was such a relief.

Neudexta comes a pill form and is pricey and I have since switched to Dextromethorphan/quinidine which has the same ingredients but it is a fraction of the cost. It is mixed at a compounding pharmacy.