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2019 - What Will It Bring?

January 5, 2019

2019 - What will it bring?

It's difficult to say.  This was going to the year photography by db walton would have been recreated.  Well, little did I know a year ago that would all come to an abrupt halt.

There's no telling what will happen. Only God knows.  But, for me, with my businesses closing and my physical abilities being impaired, it means learning how to cope and manage my myasthenia gravis.

While I first got sick in January of 2018, it wasn't until August that we really knew what was going on.  When I got the flu January, 2018, I simply thought it was a very bad flu.  Months later when I thought I was taking a long time to recover my wife convinced me to go to the doctor.  She said it was taking too long to recover.  I should have felt better by then.

What I didn't tell my wife at that time was I was looking at my symptoms on the Internet.  I had quite a list of maladies, but the one that fit the closest was ALS.  For that reason, I didn't want to go to the doctor to be told I had just a few years, at best, to live.

She convinced me to go to the doctors, and a few months later, I was diagnosed with double-seronegative myasthenia gravis.  While I was relieved it wasn't ALS, I was also glad there were treatments for it.  However, little did I know the treatment isn't a cure or a drug that places it in remission.  It's just a drug that goes after the main symptom -- not enough acetylcholine.  And, immunosuppressants to help the body not produce acetylcholine esterase.  

Moving Forward

Moving forward in 2019, for me, means learning how to control this chronic illness so it isn't always controlling me.  It is frustrating as anything can be.  I want to feel productive, but I can't act upon that feeling without paying severe consequences.

Let me give you an example...

Before I was diagnosed, I forced myself to do a small job.  Prior to this, I was making excuses why I couldn't accommodate a client and giving them phone numbers of local photographers.  This one, however, was going to take about an hour.  I did the job, went home, and went to bed.  I spent the next 3 days in bed.  I was thoroughly exhausted.  However, at that time I was blaming it on being out-of-shape because I was down so long with the flu and a subsequent septic infection in my knee.

Once I was diagnosed, I read everything I could get my hands on about my illness.  I learned it is called the "snowflake disease" because everyone is different.  However, the most common underlying symptom is fatigue.  

So, how was I to deal with this overwhelming fatigue?

From my reading and consultations with my neurologist, you simply deal with it through getting a lot of rest, not exerting yourself, avoiding stress (physical, mental and emotional), and taking your medication religiously. This wasn't the answer I was hoping for.  I was hoping for something like, "Take your pills everyday and you'll be able to go bike riding, mow the lawn, hiking, and doing portrait sessions.

Well, I was wrong.  

2019

2019 has it's built-in stress, which doesn't help things.  However, Elizabethe and I feel it is best we sell everything and move closer to some of our children.  As my condition worsens, we're going to need the help of family.  We hope we can pull off the move later this year.

My dream is we'll find a buyer for the house and all our furnishings and be able to move before summer is over.

 
 
 
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