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

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

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

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

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

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.

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.

PPSNYS Workshop 2018

PPSNYS Workshop 2018

Yesterday I completed my week at PPSNYS Photo Imaging Workshop 2018.  My instructor was Rick Friedman.  Excellent instructor and I learned a lot.

Our topic was speedlight (battery powered strobe lights) photography.  There were 8 of us in the class and everyone had a great time.

copyright 2018 db walton

Receiving my 2 PPA Educational Merits

Healthwise

Healthwise, I started off pretty well, but by the time Tuesday rolled around I was in bad shape.  I started having involuntary tremors in my left hand.  But, Wednesday was better, and then I proceeded to go downhill again from there.  Today, I’m guarding myself so I don’t end up feeling sick for church.

I’ve discovered steak seems to help.  Not hamburger, but rare beef.  (I have not noticed any real change after eating a burger.  However, I’ve been experimenting since making this discovery and lean steak seems to boost my energy level and reduce the other symptoms.

Texas Roadhouse

In keeping up with my red meat consumption, we used our gift certificates for Texas Roadhouse for dinner last night.  I ate half my steak there, and brought the other half home.  This morning, I ate 1/4 to keep my strength up in case it is red beef related.  So far my theory is holding up.

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.