12 -- The Chatty Sister Must Now Shut Up! / SENTENCES
12 The Chatty Sister
Must Now Shut Up / SENTENCES
As of July 20, 2018
So at last I had a definitive diagnosis. Let me share a little bit about that, to give a bit of perspective and information.
Myasthenia Gravis is relatively rare. There are many variances to the disease,
which gives it the description of being a “Snowflake Disease.” The particular variant I have is called Anti-MuSK antibody myasthenia gravis. It is part of a subset group called
Seronegative MG. Seronegative means
that I did not test positive to any of the initial blood tests. In clinical terms, that means there are no
detectable antibodies to the acetylcholine receptor.
(Clear as mud, right?)
The next step was a
test for MuSK – this meant another blood test, looking for antibodies against muscle-specific
tyrosine kinase (MuSK) receptors. These
receptors are a surface membrane component that is necessary in the development
of neuromuscular junction. I tested positive for this variation.
In a group of
100,000 people, 20 may have Myasthenia Gravis.
Of those 20, only ONE of those will be MuSK. Yep.
I’m a Snowflake.
The type of MG I
have affects the bulbar muscles mostly.
In other words, my vision, vocal chords, throat and neck muscles, and
diaphragm muscle. I struggle with double
and blurred vision. My speech is slurred, and my singing voice is gone. (The
Choir is going to have to find another alto, I’m more a “growlto” now.) I choke easily and must be very careful when
I eat or drink anything. I have had
trouble holding my head up, and I am at risk for breathing issues because my
diaphragm muscle gets tired and stops helping my lungs pull and push air in and
out of my body. Medications and therapy
will help all of these symptoms, thankfully.
Other things will
help as well. Rest is imperative for
me. I close my eyes when my vision gets
crazy. If my arms and legs begin to feel
like I’m weighted with concrete blocks, it’s time to lie down a while.
Here’s a tough
one. I have one sister, Becky. I always been The Chatty Sister, she’s the
quiet one. If you ask Becky a question
that requires a “yes” or “no” answer, that’s what you will get: A YES, or a NO. Nothing much else, she is short, sweet, and
to the point.
If you ask ME the same question, I will give you the YES or NO, quantify it with a detailed explanation of why I think that is the correct answer, and likely tell you some family story that somehow (to my way of thinking, anyway) relates to the question.
Now, with MG, The Chatty Sister must shut up! My voice wears out, my throat hurts, and my speech becomes too slurred to understand. The thing about MG is that the more you use an affected muscle, the weaker it gets. Talking and chewing food just wears me out -- hence, the trouble swallowing, the difficulty speaking, the greater the choking hazard. It's a Catch 22.
If you ask ME the same question, I will give you the YES or NO, quantify it with a detailed explanation of why I think that is the correct answer, and likely tell you some family story that somehow (to my way of thinking, anyway) relates to the question.
Now, with MG, The Chatty Sister must shut up! My voice wears out, my throat hurts, and my speech becomes too slurred to understand. The thing about MG is that the more you use an affected muscle, the weaker it gets. Talking and chewing food just wears me out -- hence, the trouble swallowing, the difficulty speaking, the greater the choking hazard. It's a Catch 22.
I drink through a
straw, it is easier for me. I try to eat
a “soft mechanical diet.” Food doesn’t
have to be completely pureed, but I avoid things that I have to chew a lot. Or at least cut things up into smaller
bites.
I do breath support
exercises, several times a day. The most
dangerous aspect of this disease is going into a Myasthenic Crisis due to
respiratory failure.
So, learning to
manage all these lifestyle changes will definitely take some time.
I have a feeling the
hardest one is going to be not talking so much.
*** *** *** *** ***
Untethered Time Travel: SENTENCES
I am 9 years old and
in the 4th grade. It is
1965. My class is a “split-combination”
– meaning, some 4th graders are merged into a 5th grade
class to avoid over-crowding. I am one
of the six “lucky” 4th graders who were bumped up to the 5th
grade group. Mrs. Flake is our
teacher.
There is a sheet of
notebook paper in front of me. With a
yellow pencil, I have numbered the blue lines 1 to 100. I am writing the same thing on each line,
over and over. The pencil is getting
duller as I scrawl. My hand is all
smudged from graphite. This is not the
first time I have had to do this assignment.
I must learn to stop
talking in Mrs. Flake’s class.
I must learn to stop talking in Mrs. Flake’s class.
I must learn to stop talking in Mrs. Flake’s class.
I don’t think it
ever works.
The main thing I learn is that writing that much gives my hand a cramp.
And when I turn it in, all Mrs. Flake does is tear it up and throw it in the trash.
The main thing I learn is that writing that much gives my hand a cramp.
And when I turn it in, all Mrs. Flake does is tear it up and throw it in the trash.
Comments
You, a retired teacher, had to talk: Becky, working in finance, had to quietly focus her attention! Good career match!
The way I see things as a former Vocational Rehabilitation Counselor ... :)