Everyday is Different

Everyday is Different

Every day is different.  In fact, every hour and minute is different since contracting this diseases.  One minute I might be walking normal, and the next you’d think I was drunk.  Another minute I might be talking just fine and the next minute words don’t escape my lips.

It is difficult coming to grips with the changes.  While you want to make plans, you don’t really know what is in store.  For that matter, do any of us know what is in store one day to the next?

Of course, we don’t, but we operate on the assumption that tomorrow we will feel like we do today.  When you are told you have an incurable disease, the assumption changes that tomorrow you will feel crappy just like you do today.  So, you go from making normal plans, and now you tend to see things as planning for the worse.

Attitude

Having said that, you’re probably thinking I need to have a positive attitude.  I’m trying, but I also have to have a realistic attitude.  I’m thinking positive that by working with my doctors I will find a happy balance between medications, rest and activity.  The realistic part is I won’t get better, but I will only get better at how I manage and cope.

So, yes, if I spend 30 minutes working in the yard today and feel crappy for three days afterward, I can probably plan on that being the result of 30 minutes of yard work.  On the other hand,  if I do 15 minutes, followed by an hour nap, and feel fine the next day, I can probably say I can handle 15 minutes if I take a nap after doing the work.

Realistic

I can have a hope I might be able to do more than 30 minutes once I’m on the right dose of pyridostigmine and prednisone.  However, to be realistic, my endurance may not ever change.  What might change is how I feel between activities.

Gratitude

Gratitude is playing a big part in my positive attitude. I woke at 4 am and couldn’t go back to sleep so I went into my office, sat in my new chair (which I’ll tell you more in a bit), ate some food and piddled on my computer.  I’m grateful I did that.

The other day the delivered and set up a zero-gravity chair for me.  The doctor wrote a prescription for the chair, and I shopped around and all I could find online is stuff that cost $3500 to $9000!  These are chair specifically built for people with problems like MG, MS, ALS, etc.  I walked into Raymour and Flannigan and asked described what I needed a chair to do.  The salesman took me right to a chair that was perfect.  It was a tad over $1000.

After the set it up, I tried to use a laptop desk we have.  The wheels made it so it would not fit next to the chair.  My wife took the table legs, went to a local metal shop, they cut them off and ground the metal and didn’t charge her.  I now have it configured so I can see and use it in such a way that it rests my neck and back muscles and is less stressful on my hands and arms.

As I sat in this rig this morning, I was overcome with a sense of relaxation I have not felt since getting MG.  I was also overcome with gratitude for a Heavenly Father who has helped me work around limitations imposed by MG.  My gratitude for my wife being wise enough to take the table to the metal shop and get it modified is also near the top of the list too.

Sprained Thumb

It turns out Elizabethe has a sprained thumb. I took her to the orthopedic office. They x-rayed her hand and determined nothing is broken. She now has a brace she has to wear for the next several weeks. It completely immobilizes her sprained thumb.

Sprained Thumb

It turns out Elizabethe has a sprained thumb.  I took her to the orthopedic office.  They x-rayed her hand and determined nothing is broken.  She now has a brace she has to wear for the next several weeks.  It completely immobilizes her sprained thumb.

Since we were out that way, and since there is a Taco Bell close by, we stopped at it for lunch.  There’s nothing like getting your Taco Bell fix.

The young lady who took our order was very much on the ball.  She was working like crazy while a few others just seemed to be in their own little world.  She asked if we’d go on-line and take the survey.  Given how hard she worked for it, we’ll do it.

This was good to see because some of the other Taco Bells in the area seem to have a complete don’t care attitude — especially the ones that have a K.F.C. joined to them.  I’m not sure if it is the franchise owner or the corporation, but they really need to get their act together.  At least this young lady today had the right attitude, and if every employee at every Taco Bell were that attentive to the customers they’d see their bottom line increase.


The temple tonight was pretty busy.  I met a fellow photographer’s son there.  We had a nice chat.  He was on his way to BYU and traveling with a mission friend from Sweden.

Verde of the Chili Kind

Verde of the Chili Kind is what I made for dinner today. Sisters Flores and Harline were our dinner guests tonight. I cooked up a pork butt and some green tomatillo sauce and mixed it all together for a sweet and tangy chili verde.

Verde of the Chili Kind

Verde of the Chili Kind is what I made for dinner today.  Sisters Flores and Harline were our dinner guests tonight.  I cooked up a pork butt and some green tomatillo sauce and mixed it all together for a sweet and tangy chili verde.  This also provided a vehicle for sampling some of my hot sauces I’ve recently made.

Speaking of hot sauce, my latest was an apricot-carrot-habanero sauce.  Hotter than my last hot sauce, but sweeter too.

Tomorrow we go to Boldt Castle.  I hope I have the energy for this.  I’ve been so drained lately.

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We had a great lesson by Matt Baker in Priesthood Meeting today.  Of course, his lessons are always great.  Today’s was on Pres. Uchtdorf’s talk An Attitude of Gratitude.    It was a good reminder to be grateful… not “grateful for ____”, but GRATEFUL.

This came right after a great Sunday School lesson by Dave Huber about Job.  What do gratitude and Job have to do with each other?  Well, read both – the Book of Job and Pres. Uchtdorf’s talk and I think it will become clear.

Be GRATEFUL.

That’s what I’m going to work on this week.  Being grateful.  Period.

Career Day

I don’t expect high school students to know exactly what they are going to do for a career. In fact, most college majors get changed 2-3 times. What I do expect is for them to take an interest in Career Day (i.e. take it serious) as an opportunity to learn. What many of them don’t know is these people remember them. That is, if you take career day casually, it may come back and bite you when it comes time to get a job. Let me put it this way: They may remember your casual attitude at career day and thus decide you’ll be casual with your attitude at work.

Career Day

I spent the morning at the local high school for career day.  I was surprised about a couple of things.  First, most of the students were just wandering around in circles.  Second, it was like they were afraid to make eye contact with any of the professionals.

The part about this that bothers me is we’re raising a generation that is lacking in social skills.  Not all kids are this way.  I know some amazing teenagers, however, they are the minority.

If one were in a teachable mood, and sincerely asked what they should do to prepare for the future, I would tell them to learn how to carry a conversation, and look people in the eyes when you talk to them.  Look people in the eyes and say, “Hi”, even if you don’t intend to have a conversation.  Just because you say, “Hi”, doesn’t commit you to a conversation, but it shows you acknowledge the person’s existence.

This is nothing new.  I remembered when our family moved to California in the late 60s, my dad said, “Hi”, to someone.  A friend asked, “Do you know that guy?”   My dad told him he did not, but the next time he says, “Hi”, the guy will say, “Hi”, back.

Perhaps I will recommend the school make a game out of career day.  Give the students bingo cards.  To complete the bingo card, they have to go and ask key questions of a professional.  If they do, they get a stamp in that square.  Get BINGO and you get a price.  Get a black-out card, and get 5 prizes.

I don’t expect high school students to know exactly what they are going to do for a career.  In fact, most college majors get changed 2-3 times.  What I do expect is for them to take an interest in Career Day (i.e. take it serious) as an opportunity to learn.  What many of them don’t know is these people remember them.  That is, if you take career day casually, it may come back and bite you when it comes time to get a job.  Let me put it this way:  They may remember your casual attitude at career day and thus decide you’ll be casual with your attitude at work.

So, get excited about career day.  Make an impression.  Be impressive like the young man who had a tie on.  Take career day serious – this professionals do.