Category Archives: Latter-day Saints

Unsure

Unsure

I’m unsure what’s worse getting a cold while on prednisone or getting a cold and having MG.  I’m sure the three together are working to keep me down this last two weeks.  The last two weeks have been the absolute worse since I contracted MG — short of when Elizabethe and I had the flu earlier this year.

Balancing Act

It’s a balancing act.  One medication has this effect, while another one is supposed to deal with that problem.  The doctors have their work cut out for them.  It must be quite the dilemma trying to decide if someone should be treated for high blood pressure or taken off prednisone.

I can only wait and see.

Hill Cumorah Pageant

An announcement Sunday was made concerning pageants in the church.  It appears the Hill Cumorah Pageant will wind down by 2020.  For many of the people in this region, that will be quite a culture change.

I hope people will now spread out their visits to Palmyra.  The Pageant windfall is nice, but I think if all the locals play this right, they might seel blessings come more steadily throughout the year and years to come.

People will still flock to Palmyra to see the sacred sites.  It just won’t all be mid-July.

Decisions

We are facing many decisions.  We’re leaning towards selling the house and building here in Palmyra, and finding someplace closer to the girls in Utah.  There is no way I can physically manage the house.  I can barely do the bare minimum each day without totally exhausting myself.  Myasthenia Gravis is quite debilitating.

I read that men who contract MG lose about 50% of their income on the average.  While I don’t remember the figure of those who become completely disabled, the research paper did say that a large majority find they cannot work at all or very little.

In my Myastenia Gravis for Men group, it is a very common consensus that there is a lot of down-play about the disease.  I conducted a little poll and asked, “Do you have pain associated with your MG?”

Now, you’ll find website after website that says there is no pain associated with MG.  However, my little poll says about 67% have pain (50% most of the time + 17% some of the time).  That’s only 1/3rd who say they don’t have pain.  It’s unscientific, but it confirms my suspicions.

Another comment you hear is, “Many people with MG go on to live productive lives.”

We got talking about this in the group.  We’re all kind of laughing about how they define “productive”.  They definitely don’t mean “active”!  Most of us say our productivity is cut drastically and activity even more so.

Productivity

I know before I caught a cold a couple of weeks ago, my “productivity” was about 30-60 minutes a day.  For the last two weeks, it has been about 1-2 hours a week split between 2-3 days.  In other words, this cold dropped me from 3.5-7 hours a week down to 1-2 hours a week.

Activity

The activity I tolerate most is walking slowly.  Even then, I must be careful to avoid overdoing it.  When my legs aren’t all weak feeling, it is nice to walk a little.  When I overdo it, the results are the pain, weakness, and fatigue.

Even typing my blog is fatiguing.  (Hence, so few entries this year.)  Brain fog makes it worse.  I’m constantly getting red-lines under words because my fingers aren’t hitting the right keys.  Then, it’s difficult to think, “What word was I trying to type?”  That only makes things worse because I find it upsetting when I type something like, “zyjod od s yrdyz” when I meant to type, “This is a test”.  (I’ve never had a problem with my hands being shifted until this brain fog thing started to happen.

Talking is pretty much a no-no.  That’s one of the first muscles to be affected.  Paralyzed vocal chords carry with them a double-whammy.  The first whammy is losing your voice.  The second is the reflection that coughing will solve the problem.  It doesn’t.  It only makes it worse, but try telling your subconscious that.

My Hope

My hope is the doctors and I will find a good balance of my medication that will allow me to have the stamina to at least feel like I was able to get some exercise in.  It may not be the stamina needed to mow the lawn, shovel snow, fix a broken faucet, build a shelf for Elizabethe, etc., however, it would be nice to know I’m able to do something for my heart.  It might be riding my stationary bike for 15 minutes a couple of times a day.  (Right now, the doctor has told me to not attempt any exercise program until we get my medication stabilized.)

Reality tells me there will be good days and bad days.  Hope tells me there should be a way to lesson the bad days (which have been all too frequent lately), and know my limits.

Conference is Life-Changing

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

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

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

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.

 

Preliminary Diagnosis

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.

28 Draws

28 Draws

28 draws is what I’m up to.  That’s 28+ different blood tests as they try to figure out what’s ailing me.  While a “normal” means that particular test is within expected range, it doesn’t necessarily mean, in all cases, that the thing being tested for is not present.  Example:  Someone can test negative for the Rheumatoid Arthritis  factor in their blood, but still have rheumatoid arthritis.

So, here I sit, waiting for the last 5 test results.  Today is actually going pretty well.  Saturday and  Sunday were pretty bad.  Elizabethe saw one of my tremors and grabbed my thumb (it was wagging up and down very fast.)  She said it felt like it was “vibrating”.

Today, I’m feeling the best I’ve felt in a LONG time.  I wish I knew what is accounting for my feeling of well being today.  I mowed 1/2 the lawn, but I don’t want to push things.  Past experience has shown if I push too hard, things only get worse the next day.  I’m really hoping tomorrow will be a repeat of today.

Who To Trust

When it comes to autoimmune things, I really don’t trust sources with no scientific background or data.  Yeah, there are people who rub an essential oil on themselves, they feel better, and pronounce themselves cured.  I’m sorry — that’s not a cure unless it can be repeated over, and over, and over again.

In the case of diseases like Myasthenia Gravis, Ataxia, CFS, ALS, etc., there are lots of well meaning people out there who really don’t have a clue.  I’m preparing myself for the day when they find out what’s going on to be able to respond to people who try to push their “cure”.

I guess the best way to respond is to see how much they really know about the disease.  Let’s face it, doctors who have studied most of their lives, specializing in some of these ailments, don’t have a cure.  Yet, there will be someone who paid $350 to join a MLM group to sell oils who think they have an oil that will cure it.

I’ve been doing a LOT of research on the Internet looking for clues.  For the most part, I’m finding I trust sites like the Mayo Clinic, WebMD, etc.

Hazy

Hazy

I can’t tell if I’m hazy because I’m fatigued, or I’m fatigued because my brain is hazy.   I’m counting the days before my next appointment.  It will be nice if the doctor can pinpoint the cause of my symptoms.

Church today went okay, but late in the afternoon, I was standing talking to my wife when I just lost all energy.  It was as though someone unplugged my power source.  I didn’t feel dizzy or faint, just zapped of all energy.

Christ Centered

We had a wonderful Christ centered Sacrament meeting today.  President and Sister Evans were our speakers.  They have amazing testimonies and their talks were amazing.

I shared with them afterwards how bad I felt when I had brought a friend to church.  The first speaker talked about the “atonement” without mentioning Christ.  I felt sad that the speaker didn’t talk about how Heavenly Father provided a Savior who would atone for our sins.  Instead, it was more like the “atonement” was some mystical thing.  It’s not.  It is a plan our Heavenly Father had and it was fulfilled by Jesus Christ.

Priesthood Meeting

Today was my first Sunday teaching Elder’s Quorum on the 4th Sunday.  Our lesson was about ministering and how ministering means serving others and not ourselves.  The men in the class gave some wonderful examples from the scriptures.  I felt very good about how the lesson went.

Pageant 2018 Shift

Pageant 2018 Shift

I fulfilled my Pageant 2018 Shift today.  It was a depressing feeling to not feel my happy self.  I usually enjoy working Pageant security, but with this illness it was everything I could do to endure the 4 hours.

When I got home Elizabethe gave me the painful reminder that I may have to stop volunteering for stuff like this.

I fear how I’m going to handle next week’s photography school.

Update

Since mowing the lawn Monday I have been very sick.  They are doing 6 more blood tests this week.  While some of them will have severe consequences if they turn out positive, at this point, knowing is better than not knowing.

The gal who drew my blood says her mom has been tested on and off for the last 4 years.  That must be heartbreaking to know you’re sick, but have the doctors stymied as to why.  She was telling me people were telling her it is all in her head.  (How cruel.)

I have this to say about it being “all in one’s head”…

My own experience is this:  If it were all in my head, I’d be riding my bicycle 25-40 miles a day, and taking 50 mile trips often.  I’d have the outside of my house painted by now, and I would have done it all by myself.  And, the list would go on.

Nobody wishes these symptoms upon themselves.  Nobody.