Tag Archives: ALS

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.

Additional Tests

Additional Tests

The doctor has ordered additional tests.  Everything was within the normal range, and now she’s ordering tests for more serious conditions.  I come back on Wednesday morning to be tested for 6 things.

While these tests can come back negative, a negative result doesn’t mean I don’t have what is being tested for.  For example, a negative RA factor doesn’t mean you don’t have rheumatoid arthritis.

During the Visit

During the visit the doctor mentioned myasthemia gravis.  After the visit, I looked up all the symptoms, and it matches, but so does ALS and Sjogren’s.  All three, plus Parkinson’s, are being tested for.

Mowing the Lawn

I came home, rested, and then mowed the lawn.  It really did me in for the rest of the day.  It is frustrating to save all my energy to mow the lawn, and then have no energy to do anything else.  And, like the last time, that feeling can last for days.

Oh, I asked the doctor, “So, if I get up in the morning feeling tired, should I go for a walk anyway in hopes that it will perk me up?”

Her answer was a resounding, “NO!”

She explained that if it is MG, going for a walk will only make things worse.  The best thing to do is if I’m tired, rest.

Florida is Cooler

Florida is Cooler

Today the weather map for the USA shows Florida is cooler than most other places.  That’s a switch.  This heatwave has hit the entire lower 48 states.  It’s miserable.

I decided to do a salad for dinner with tuna sandwiches instead of cooking.  It’s just too hot.  I bet the sister missionaries were thankful we didn’t bake lasagna for dinner.  (Elizabethe is!)

Ice cream for dinner, again because it is too hot.

Not a Good Day

It’s not a good day health wise.  Yesterday I experienced a sudden loss of strength in my fingers.  Coupled with the other symptoms I searched for what it could be.  The first thing that popped up was ALS.  Oh, I hope it isn’t that.  Reading that just compounded my already existing stress.

Drug Trial

Elizabethe is in a drug trial program.  It’s an already existing drug that has a side effect of weight loss.  They are testing to see if it is effective as a weight loss.  So far, it has taken away her appetite.  I joked that she’ll lose weight, but I’ll gain what she loses because I’ll have to eat her leftovers too.

Actually, that’s not going to happen.  Whatever it is that I have is making me less hungry than before.