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June 10, 2013
Apr 21 Email: Even Patients Get a Day Off
At this point, I started writing daily email updates. I sent this one just after midnight.
Date: Mon, 22 Apr 2013 00:27:03 -0400
From: Jon Nathan
Subject: Neuro Update: Sun 04/21
Hi everybody. I'm going to start a new thread every day for status
updates. Please keep the responses, encouragements, and requests
coming :-)
Today was a free day. I focused on static therapy. I did seated
exercises, mostly stretches and extensions, and manual dexterity
exercises as suggested by my physical and occupational therapists
respectively. I also rested quite a bit. I think it was productive,
as I relieved a lot of stress. I was also grateful to receive my
visitors today and yesterday. It means a lot to me that you were
able to come out and see me. No pressure to anyone, of course. I'm
just expressing gratitude.
I am also working hard to understand how each medication affects
my mental, physical, and neurological state. That may sound sort
of goofy, but I think being in touch with my body has to be a part
of this process. Each drug is prescribed for certain symptoms, but
symptoms often are fuzzy, or overlap, or are not easy to pin down
or describe. The staff here understands that I'm taking an active
role in my care, and they're giving me a good degree of freedom to
influence my treatment plan and schedule. For instance, I cleared
myself of interruptions from 10 PM until at least 6 AM. Rest has
to be a part of my recovery process, and not being awakened at 4
AM for blood sugar or blood pressure or oxygen level tests will
allow me to sleep more soundly.
Tomorrow I will dive back into active therapy. I think this will
become easier as I retranslate these cues to muscle memory. Maybe
I will come out of this experience with better posture and body
control than before.
My pain and discomfort symptoms are still fluctuating, but I think
that the peak amplitude of the curves may be flattening. As I have
said frequently, neck and shoulder pain are currently my biggest
obstacle. If I can continue to get this under control, it will go
a long way towards discharge. I've also started laying on a hot
pack, which seems to help relax my muscles too.
I'm also working on regulating my bowels. I won't say too much more
about that unless you ask me privately ;-)
One more minor issue I am working on is the lack of sensation in
my right abdomen, back, buttocks, thighs, and calves. I have put
a lot of effort into regaining sensation in my right hand and foot,
and I have felt some occasional burning pain in those extremities,
which is a good thing, but there is more to it than that. The
numbness in my right buttocks causes me to feel off-balance when
I'm sitting or lying, as if there is a hole cut out in the seat
below me. With some effort of concentration, I can will myself to
be comfortable. It's just another component of the process. I'm
going to ask the doctor more about this tomorrow as well.
I know I've said this before too, but relearning all of these things
that were once innate is not easy. I have a great amount of respect
for people who have been through similar circumstances. I cannot
imagine what actually losing a limb would be like. I am trying not
to overly dramatize my situation because I really think, in the
grand scheme, I am not in that terrible shape. I really appreciate
everyone bearing with me as I try to sort out my thoughts, feelings,
and intentions for my healing process.
One more thing to expect next week is the return of medical jargon
and treatment plans as opposed to some of the emotions and feelings
I've been expressing recently. I'm still awaiting the neuropathologist's
report, which will hopefully provide insight to the root cause of
my issues. If the treatment plan includes invasive therapies, so
be it. If it's just physical rehab, posture, willpower, and time,
I can handle that too. It is always difficult not to know, but I
hope to know more soon. If results continue to be inconclusive, I'm
not sure what the next steps would be. Probably more steroids rather
than radiation or chemo therapy treatments.
The food here continues to be edible. Not amazing, not awful, not
flavorful, but healthy and plentiful. I've always been a good eater
within my parameters, and I think I've gained a bit of weight here.
Part of that may be due to the bowel regulation that I discussed
earlier, but I'm working on that as well. I understand how to keep
my salt and sugar levels reasonable, so I am now willing to accept
offers of savory and sweet snacks :-). If I consume them in moderation,
I think I can avoid insulin and blood pressure medications.
Now that I've cleared my mind and rested my body, I'm going to try
to get a good nights sleep. I'm looking forward to working hard,
fixing myself, and going home soon to my wife and little girl.
Thank you again and again for listening, and I will try to write
more tomorrow.
-Jon
Posted by jon at June 10, 2013 1:13 AM