Conference is Life-Changing

General Conference for the Church of Jesus Christ of Latter-day Saints is life-changing.  There’s no question about it.  Every six months, faithful members of the Chruch of Jesus Christ of Latter-day Saints attend a two-day life-changing conference.

Conference is Life-Changing

General Conference for the Church of Jesus Christ of Latter-day Saints is life-changing.  There’s no question about it.  Every six months, faithful members of the Chruch of Jesus Christ of Latter-day Saints attend a two-day life-changing conference.

Well, I hope it is life-changing for everyone.  It requires commitment, motivation to do better, and follow through.  For someone to sit there and say they didn’t get much out of General Conference is an admission that it is their own fault.

What Did I Find Life-Changing?

  • At a time in my life, due to my illness, when it is difficult to endure 3 hours of ANYTHING, the reduction from 3 hours down to 2 hours is a welcome blessing.
  • There were several references that the Second Coming is closer than we think.  I will think twice about how I spend my time.  I will also work on repenting as needed.
  • Our Heavenly Father loves us unconditionally — even when we don’t think He does.  I will work on having more confidence that the future will work itself out.
  • Stop being angry and holding grudges.
  • Don’t beat yourself up over mistakes from the past.  I need to work on understanding that God forgives, but I need to forgive myself and dismiss any regrets I have for mistakes I’ve made.
  • It “grieves” the Lord when we don’t call the church by His name.  This is one I’ve tried hard to do — even before the reiteration given earlier this year.   I will continue to remember to reference it as the Church of Jesus Christ of Latter-day Saints.
  • Do more than just read the scriptures — study them.  Elizabethe and I will need to modify how we do our scripture “reading”.
  • Social Media Fasting – The challenge was to the sisters, but I will do it too.  I’ve already deleted those apps from my phone and tablet.  He also mentioned staying away from negative news sources.  So, I am not going to click on the “News” tab in the search engine window.
  • Even if illness or disability has struck, there are still ways to minister to others in need.  This one is harder.  My diagnosis is still new to me.  However, I plan to start thinking of ways I can serve without causing pain or weakness to my body.
  • Go to the temple more often.  This is another difficult one.  But, I got thinking… I’ve canceled most other “extra” activities because I simply can’t do them anymore.  An endowment session is no more exerting than watching TV and having to get up to go to the bathroom a couple of times during a movie.  If I can watch a 2-hour movie, I can attend an additional session once a week.

Every Six Months

Every six months is a life-changing event.  I’m thankful for living prophets who receive revelation and remind us what we need to do to return to our Heavenly Father.

Fasting Is Good

Fasting is good, especially when it is an abstinence from social media.  A few months ago, the prophet asked the youth to do a social media fast for 7 days.  Last night, he asked the women to do a social media fast for 10 days.

Fasting Is Good

Fasting is good, especially when it is an abstinence from social media.  A few months ago, the prophet asked the youth to do a social media fast for 7 days.  Last night, he asked the women to do a social media fast for 10 days.

When the prophet asked the youth to fast for 7 days I decided to do it too.  I figure what’s good for them is good for everyone.  With last night’s request, I figured, what’s good for the goose is good for the gander.

When I did the 7 days fast I deleted all social media applications from my cell phone.  I never installed them after that.  This time I’ve deleted them from my tablet.  After the 10 days, I might not install them their either.

Conference Talks and Social Media

I noticed the mention in a couple of conference talks the contention that takes place on social media.  Just in the last few days, I’ve blocked 4 members from my Facebook account.  Why?  Contention.

One of the biggest contentions going on right now concerns Justice Kavanaugh’s nomination, and subsequent installment, to the Supreme Court.  It has split many people into three camps:  Those who feel Kavanaugh is being falsely accused and assumed guilty, and those who believe all his accuser has said about him.

The third camp seems to be the only rational camp.  Their rationale is this:  a presumption of innocence must always take precedence in legal matters, and victims should be listened to.  The two camps that are split can’t see this middle ground.  It’s simply this – his accuser should go to the police where the alleged crime to place, report it and let the investigation run its course.

There are consequences to what I just said.  If the investigation shows a crime was committed, a trial will be convened, and if found guilty, Kavanaugh will most likely be removed from the bench.  However, if it clears Kavanaugh of all wrongdoings, his accuser may have consequences to pay.

It Won’t Come to That

It won’t come to that.  She’s not going to go to the authorities.  Kavanaugh is going to serve and, just Clarance Thomas, when the smoke clears the air people will shake their head at this fiasco that has taken place.

The Truly Scary Part

The truly scary part is there are people who want to lynch Kavanaugh.  They believe his accuser is 100% truthful, he doesn’t need a trial, he’s guilty because she said he did these things.

I HAVE SAT ON THE ACCUSED SIDE.  It isn’t pretty.  It emotionally scars you for life.  My wife still leaves the room if I start to talk about it.  She can’t take being reminded of it.  It also had dire financial consequences.  I too was assumed guilty without any opportunity to prove my innocence.

The truly scary part is those in power who choose to ignore the Bill of Rights.  What adds it is there are those among us who believe it is okay that those in power ignore the Bill of Rights.  After all, if someone says it, it must be true, and if they accuse someone, that person is guilty.

Heaven help them if they are ever falsely accused.

Blocking

I take blocking on  Facebook serious.  I don’t block people because I disagree with them, or because I don’t like them.  I block people for behaving like jerks online.  They may be the most delightful person face-to-face, but when they turn in to an ugly monster online, I block them.

Blocking

I take blocking on  Facebook serious.  I don’t block people because I disagree with them, or because I don’t like them.  Blocking people for behaving like jerks online is what I do.  They may be the most delightful person face-to-face, but when they turn in to an ugly monster online, I block them.

Last night I woke in the middle of the night with the impression to block 3 friends.  Yes, they are friends, but not the Facebook type of “Friends” anymore.  The impression was strong.

I signed on to Facebook, ready to do it, and thought… I should pray about this.  So, I did.  I prayed about it and felt even stronger that it was the right thing to do.  I don’t know why I simply felt blocking them was the right thing to do.

Jerks

When I say behaving like jerks, here’s what I consider to be a jerk…

  • Trolling – this is at the type of my list.  This is a form of cyber-bullying that I won’t tolerate anymore.  It can be innocuous as simply replying in disagreement to every comment specific people make, or as outright as calling people names.
  • Cussing – use the F-word, and you’re blocked.  There is no place for that word — EVER.  There are a few others I have on the don’t use list.
  • Intentionally insulting – Here’s an example, a guy in a group camera group I belong to said everyone who voted for Trump can’t read big words.  I responded letting him know I felt his comment was beneath him and that he was better than that.  (And, I did not vote for Trump!)  His response was even more insulting.   I blocked him.
  • Constantly perpetuation false information – There are few people who spread the dumbest stuff around.  If it is dangerous to people’s health, and they do it often, I’ll block them.  I also block them if the information is slandering someone.
  • Pure Evil – if someone does something that’s pure evil, and I don’t need to enumerate on evil, I will immediately block them.  I see supporting evil as bad as doing it.  I’ve blocked people for death threats against others, as well as agreeing with someone who has made such a threat.

Where I Draw the Line

I draw the line with going beyond disagreement by making it personal.  When someone takes a disagreement and uses their position to belittle or intimidate, that’s where the person now put themselves in one of my above categories.

Yes, I may have been guilty of doing this myself, but I’ve worked on disciplining myself to avoid doing it.  There are times I want to say, “You’re an idiot,” but I don’t.  I’m even working on not thinking it, because if I don’t think it, I won’t say it.

What Makes Me Sad

What makes me sad is when I block a member of the Church of Jesus Christ of Latter-day Saints.  We are taught to behave better than that.  The scriptures teach to avoid contention.

Years ago I recall seeing a bumper sticker on a car in the church parking lot.  (This was in California.)  It was contentious and vulgar.  I think the bishop might have talked to the person because a few weeks later, you can see where they scratched the sticker off the car.  It left an ugly mark.

It makes me sad because some of these people are unknowingly leaving ugly marks because of their posts on social media.

Still Testing

I’m still testing my limits.  Currently, it’s about 30-60 minutes per day.  It is not a lot, but if I choose to day, say 2 hours, I’ll probably be down for the rest of that day, plus the next 3 days.

I saw the neurologist last week, and he placed me on prednisone in addition to the pyridostigmine.  He said the pyridostigmine goes after the symptoms, where the prednisone goes after the cause.

Still Testing

I’m still testing my limits.  Currently, it’s about 30-60 minutes per day.  It is not a lot, but if I choose to day, say 2 hours, I’ll probably be down for the rest of that day, plus the next 3 days.

I saw the neurologist last week, and he placed me on prednisone in addition to the pyridostigmine.  He said the pyridostigmine goes after the symptoms, where the prednisone goes after the cause.

CT Scan

I also go in next week for a CT scan of my chest — specifically the thymus gland.  The idea there is to rule it out as the cause of the myasthenia gravis.  (A tumor on the thymus gland is believed to be one of the causes of MG.)

Keeping Limits

Keeping these limits are helping.  I haven’t had a really bad crash since holding to my limits.  With 30-60 minutes per day I’ve decided I must prioritize my week and choose ONE activity for any given day.  (I mean, how much can you do in 30-60 minutes?)

I did learn the other day having a dentist AND a doctor appointment on the same day not only exceeded my limit, but I paid for it also.   I was thinking… how hard can it be to sit in the dental chair and sit in the doctor’s office?  Well, evidently, too much.  I suspect it was the walking from the car to the offices and back that did it.  Oh, and I also stopped to get a couple of items at the store.  Yeah… I overdid it that day.

Next Steps

It sounds like the next steps are the CT Scan, followed by 3 more weeks on the pyridostigmine and prednisone.  I then go back to the doctor to talk about the results of the CT scan and discuss if more changes need to be made in my medication.

In discussion with other myasthenics, this process can take up to 3 years to get things dialed in.  And then, the body is constantly changing.  Some people go in to partial remission once on a steady program (and by that, I mean they feel much better, but still have to limit physical activity), while others experience a tolerance to the medications and need other changes.

Either way, it is a lifetime of learning to deal with it.

Oh, and it’s official.  I now have handicap plates on my car.

Nearly Two Weeks

Nearly Two Weeks

It’s difficult to believe it is nearly two weeks since my last post.  Natalie and our grandsons went home a couple of days ago, and it was a joy having them here.  At the same time, it was a huge help having Natalie around.  Time sure flies.

When thinking about my blog the other day, I thought… I don’t have a lot to update.  My days lately are spent resting mostly.    Aside from the digital art I work on, it’s been a pretty lazy summer (and not by choice.)

Watkins Glen

I did manage to go to Watkin Glen with Natalie and the boys.  I made it to the 2nd set of stairs and had to turn and go back.  My feet weren’t working properly and I didn’t want to ruin everyone’s day by falling and getting hurt.

oh well
We Tried to Cover His Name, but, Oh, well.
dbwalton
Yeah, Cover the Crook’s Name Please
Cheesy Smiles
Cheesy Smiles
Natalie and Boys
Natalie and Boys

Current Adaptations

My current adaptations may change with my next doctor visit.  We’ll talk about adjusting the pyridostigmine and what activities I should and shouldn’t be doing.

 

Making Adaptations

I find making adaptations necessary given my prognosis.  Whether it is myasthenia gravis, lupus, ALS, diabetes, etc… they say if you don’t manage it, it will manage you.  I’m learning how to manage it.

Making Adaptations

I find making adaptations necessary given my prognosis.  Whether it is myasthenia gravis, lupus, ALS, diabetes, etc… they say if you don’t manage it, it will manage you.  I’m learning how to manage it.

My dad, upon learning I have MG, sent me 4 books on the disease.  I just finished reading 2 of them.  Elizabethe read one of the other ones while I was reading these two.  Comparing notes, they basically said the same thing – learn what works for you as far as a daily schedule, manage what you eat, get plenty of rest, don’t over do it, communicate with your doctor, etc.

Speaking of the latter – communicating with your doctor…

One of the last things he said to me was, “And, whatever you do, don’t lie to me.”

I wondered if he thought I was pulling his leg regarding one of my symptoms, but I knew I was being completely honest with him.  There was one symptom, I thought I would find odd if I were him.  It was water getting stuck in my throat.  Not solid food, but plain water gets stuck.  Then, when reading one of the books the author noted choking on thin liquids as being a symptom.

Daily Tasks

I’m starting to learn I should limit myself daily to one major task.  A major task right now is anything requiring me to be on my feet exerting myself – mowing the lawn, doing a photo shoot, going to the stoor, attending a meeting, etc.  If I try to do more, I pay for it during the night and the next morning… or longer.

Over doing it sneaks up on me.  I can’t wait until I’m mid task and decide I can’t do any more.  I’ll feel okay, but then I’ll stop for a bathroom break, and then it will hit me.  When it hits, it hits HARD.  This is what I have to learn is how far I can go so that doesn’t happen.

What It Is Like

What is it like having myasthenia gravis?

They say it is different for each person.  It’s nickname is the snowflake disease.  Every snowflake is different, so is every MG patient.  Here is what I go through…

  • My vision starts to “quiver”. It’s like my eyes are vibrating (is the best way to describe it).  It creates a little blurriness in my vision.
  • Twitching under my left eye,
  • Flu-like aches and pains all over the body,
  • Arms and legs always feel like I finished a big workout,
  • Clumsiness,
  • Loss of control and strength of my fingers, arms, legs and feet,
  • Strong spasms (muscles knot up in to lumps the size of a marble or as large as a golf ball – very painful),
  • More coughing and sneezing,
  • Brain Fog,
  • Occasional aura migraine flashes,
  • Difficulty sleeping (because of the pain and spasms),
  • Tinnitus,
  • Problems swallowing water, milk, and most other non-carbonated liquids (the carbonation seems to help).

As a result, I’m worn out from the time I wake up, until the time I go to sleep.  Exercise makes things worse (in fact, it causes muscle damage in people with MG).   Relaxation and sleep are the most rejuvenating activities.

Comparing with Other MG Patients

I’ve joined a group of men with MG, and I’m reading some books written by people with MG.  We all have one thing in common as far as our symptoms – fatigue.  Fatigue and weakness are the biggest complaints.  As a result, there is a common thread of longer-than normal sleeping and mid-day naps.

Other Adaptations

I’m going to have to start reducing the clutter and getting rid of things I don’t need, don’t use, and most of all, things I cannot use any more.  With MG it doesn’t pay to have big aspirations to take on a big project.  So, if they are things associated with big projects, I’m getting rid of them.

Life will have to be simpler from here on out.

Blessings

I’m counting my blessing.  MG has not affected my ability to type or play the piano.  It has not impacted my ability to chew my food.  It has not distorted my face.  I have not gone cross-eyed.

In spite of the brain fog, I can type (write) (given quiet time).  However, I’m doing less blogging because it is mentally exhausting and tiring.  For now, I’m thankful when I have moments that I don’t feel out of it.

Picking up my 2 year old grandson today made me grateful I had the strength to pick him up.  (He’s quite the chunk.)  The other day, I couldn’t move a door that was simply leaning against a shelf, and a few days  later, I couldn’t pick up the aluminum step ladder.  So, I’m grateful for occasionally being able to hold my grandchildren.

Preliminary Diagnosis

With the help from some close friends (Matt and Becca), I was able to get in to see a neurologist sooner than September 20th.  Ironically, it was with the same neurological group with which I have the 9/20 appointment.

Preliminary Diagnosis

With the help from some close friends (Matt and Becca), I was able to get in to see a neurologist sooner than September 20th.  Ironically, it was with the same neurological group with which I have the 9/20 appointment.

The neurologist connected a bunch of wires and did some shock stimulus and some needle stimulus tests.  At the end, he concluded that there is a very strong likelihood that we can eliminate ALS, and perhaps even Parkinson’s.  However, he’s leaning more towards Myasthenia Gravis (MG for short).

He put me on pyridostigmine and said if it helps me feel better, then I’ve got MG.  If it does not, we’ve saved time.  He still wants me to get an MRI which is scheduled for tomorrow evening.

PROGRESS!

Tractors

They didn’t have my medication at the pharmacy so it had to be special ordered.  (There’s very small percentage of people with MG.)  So, I’m hoping it WILL help (yeah, it’s kind of funny to hope I have MG, but I’m tired of living like this — constant pain and fatigue.)  Because it will be in this afternoon, I decided to take the grandson’s to see the tractors as I promised.  I figure that should wear me out and be a good test for this medication.

We went and saw the tractors.  Ricky (the owner) was there.  He remembered me and he let me drive a big OLD Farmall Tractor and I gave Brad a ride.  It was a hoot.  Brad will always remember today, that’s for sure.

His little brother was too frightened by the noise of that big diesel engine.  It was loud and rumbly.

Ice Cream and McDonald’s

On the way home we stopped at Toomey’s Corner and bought ice cream cones.  We then stopped at McDonald’s.  The idea was to take lunch home, but the boys ate their 10 piece nuggets before we got home.

After dropping everyone off at the house, I went and picked up my prescription.  I took my first dose around 2pm.  It’s now 5pm and I’m feeling much better than I have in a long time.

Placebo effect?

Perhaps, but the doctor says if it is, I’ll at least enjoy 2-3 days not feeling crappy.  If it really is MG, I should start feeling better in 2-3 days and it will stay that way.

Posting Dereliction

I am guilty of posting dereliction.  Well, I guess if I’ve done so willfully.  (I guess it isn’t dereliction if it is unwillfully?)

Posting Dereliction

I am guilty of posting dereliction.  Well, I guess if I’ve done so willfully.  (I guess it isn’t dereliction if it is unwillfully?)

When the scripture say the spirit is willing, but the flesh is weak, I fully understand how that applies to my case.  I would willing be outside working on the yard, painting the house, and a host of other things.  I planned to paint the house this summer, but at a last minute, decide it could wait for 2019.  Anything is better than doing little to nothing.

Granted

We take so much for granted, until we don’t have it, or the threat of it being taken away comes along.  I walked a couple of blocks with Natalie and the boys to watch the bed races.  It felt so good to be outside.  That was about 2 hours ago, and I’m starting to pay the price now.

We are led to believe exercise helps us recover.  I believe that’s usually the case, but in the case of things like ALS, Myasthenia Gravis, and a few other diseases, the opposite is true.  I want so badly for the doctor to tell me they figured out what is wrong, and the best thing for me to do is to work and exercise until I drop every day.  If that would pull me out of this, I would be doing it.

In the Meantime

In the meantime I struggle with what I should write.  There have been a few days all I would be able to say is, “I laid around all day and napped and watched a couple of TV shows.”

Yeah, that may not sound very good, but when your brain and body aren’t communicating to each other the way they are supposed to, it’s the best you can do.

Two Jerks

Two jerks were sitting, smoking cigarettes,  by the open entrance to one of my properties.  My wife confronted them telling them they couldn’t smoke or loiter there.  The one said, “He lives here.”

Two Jerks

Two jerks were sitting, smoking cigarettes,  by the open entrance to one of my properties.  My wife confronted them telling them they couldn’t smoke or loiter there.  The one said, “He lives here.”

WRONG ANSWER MORON.

She said something to the effect, “You live here?  I happen to know you don’t because I’m the landlord.”

He then changed his story, “Oh, I was mistaking.”

Let’s Be Clear

Let’s be clear.  When it is your property, you set the rules as to who can, and who cannot smoke, drink, cuss, etc., while a guest on your property.  Even before non-smoking laws became the thing for states and cities to pass, some businesses would flat-out say, “No Smoking”.

Unfortunately, there were businesses who felt they would lose business if the told people they couldn’t smoke there.  That’s a bunch of hogwash.

New York State Commercials

I like the New York State TV commercials that basically say if you’re poor and uneducated, the tobacco companies are fooling and robbing you.  I think they should add: drug dealers, beer and alcohol companies, and other forms of drug peddling.  They go after doctors for prescribing too many medications, but they ignore the alcohol industry.

Next Time

The next time they are out there, I’m just going to call the police department.  There’s even a no-trespassing sign on the door.  I’ll just ask they be arrested for trespassing.

Getting Closer

I think they are getting closer to a diagnosis.  While the latest blood test results don’t account for all of my symptoms, it might account for my fatigue.  That’s good news… I guess.  The downside is the only then I can do is take it easy and wait things out.

Getting Closer

I think they are getting closer to a diagnosis.  While the latest blood test results don’t account for all of my symptoms, it might account for my fatigue.  That’s good news… I guess.  The downside is the only then I can do is take it easy and wait things out.

Yesterday I just rested.  This morning I mowed the back lawn.  It’s about lunch time and I feel relieved that they are making progress.

Permanent vs Temporary

Until they know, it’s hard to say why things are the way they are.  They could be permanent or temporary.  We always want things to be temporary when it comes to health problems, but it is a fact of life that many people have to deal with illness and disabilities that simply won’t go away or get better.  The best to hope in those cases is they won’t get worse.

Right now, the hope is this fatigue thing is temporary and once my system gets rid of the virus causing it, I won’t be so tired all the time.  That’s the hope, at least.

Life Goes On

Life goes on, with or without you.  The problem is, if you can’t take care of your responsibilities, who will?

Someone pulled me aside a couple of Sunday’s ago and out of the blue said, “You reach a point in life where you have to realize you’re around so others will have someone to serve.”

That’s a hard pill to swallow.  It’s even harder if you’ve prided yourself your whole life of being able to take care of yourself and your family.