We are now waiting for the results of the CT Scan to
determine if we will be treating my cancer or my Sjogren’s with some new
medicine combo. The goal has been since
Summer 2010 when the doctor’s finally figured out the problem an autoimmune disorder
we have been trying to get it under control.
For a while it was under control until Dec 2011 when it flared up the
first of the year I was smacked with walking pneumonia. Ever since then my immune system has been in
over drive given my body a beaten since then more and more drugs have been
added. Now we are looking at only one
being dropped and like five being added if the cancer isn’t back. The question is how many more side effects
from drugs will there be.
Physically and mentally my body is totally exhausted, as my
sister stated today I am always tired and sore.
The pain and exhaustion during
the busy part of the year, zaps all my energy, it becomes a task getting out of
the car good day not that bad, on a bad day literally have to pull myself up by
the door and slowly make it to the front door.
Make some food and get a late night snack so I don’t have to go back up
the stairs. I sit down in the lazy boy
with Mr. Turtle depending on the day the pain gets under control if not have to
take another pill before slowly climbing in bed. Before
I would take weekend vacations visiting family at the beach or the river but I
haven’t been able to do that for almost 2 years. The drive itself is exhausting leaving no
time really to do anything, then I need 2 days off to recovery from
it..lol Mostly I have been using the
weekend to make up for the lack of sleep during the week, 24 to 36 hours of
sleep on the weekend and sleeping in on Monday. The pain has also increase which means an increase
in meds that has the side effect of sleepiness.
No pain means being drowsy and possibly taking naps, my sister said she
doesn’t know how I do it, wait till she reads all the possibly side effects on
the bottle…lol
Mentally it takes me longer to do simple things that before
was easy, distraction and literally forgetting what I am doing in the middle of
doing it…lol……….Having days where you don’t have the strength or dexterity to
open a bottle of steak sauce, having the ridges in the cap send pain signals
thru out your body, unable to use the can opener (the one your sister bought because
it had a bigger handle meaning less of a struggle to use). Also get nauseated and eyes start to get
blurry after 20 minutes looking at the screen, which is why it took all day to
type this.
Tomorrow I have to schedule more appointments and a few more
test. The big and painful one is a nerve
test; it is highly likely the Sjogren’s is attacking my nerves. The Neurologist, Rheumatologist and
Digestive/Nutrition, all mention the possibility of nerve involvement. Digestion
thinks there might be some miscommunication or misfire to the stomach, the
Rheum and Neurologist think the tingling and numbness at night is the nerves
getting attacked.
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