I have got these medical issues under control I am not sure
how much more my body and mind can take the yo-yo affect that it is going
on. We get one thing under a control
then either something else rear’s its ugly head or the side effects of the medication
is worse then the pain from the ailment.
Today I did a lot more than I have had in a while by 6pm
today I was struggling to keep my eyes open at 7pm I decided to take a quick
nap. That nap end at midnight, when I
woke up to painful joints fingers, hands, wrist, elbows, knee’s, ankle’s, toes
and spine. I got up to stretch, got a
glass of water, still the pain radiated, took a pain med then crawled back in
bed, no change. I decided to follow the advice of several websites about Sjogren’s not to lay in bed if you can’t
sleep but to get up, so I rolled out of bed and went into the den at 1am messed
around with the computer played with some toys for an hour and went back to
bed. Yeah not happening tried to change
positions no luck, I can really only lay on my back, I tried stomach and sides
but everything goes numb fast, laying on the back does as well but not as fast
or bad as the other three ways. I went
ahead and took my other pain med that I am suppose to take at 9ish at 330 it is
slowly kicking in and the meds are finally making me sleepy. I am hoping to get a few more hours of shut
eye, I have a lot that needs to get accomplished at work in the morning and I
need my mind clear and able to concentrate on the task at hand.
I have been doing more research to create a better diet to
hopefully help curb the pain and inflammation that is ravaging my body head to
toe. A lot of the foods I have been
eating are actually suggested in the several different articles I have come
across. Trying hard to keep the stress
down as I mark down the days of the CT Scan to see which meds I will be on for
August a low dose Chemo drug methotrexate that is supposed to help control the
RA and Sjogren’s or if I go back on more than likely Abraxane the last chemo I
was on that helped keep me NED (no evidence of disease). My doctors are working tirelessly trying to
get my quality of life from poor (crappy) to good, at this point I will even
take fair.
It is hard to explain to people because on the outside I
look normal but that is far from the truth.
As the say the apple doesn’t fall far from the tree, many had no clue my
mom was Stage IV when she passed. It was
a shock to many, because she liked to keep things to herself and on the outside
looked and act healthy around people, but that was far from the truth. Like my mom I want to do things on my own not
leaning on or allowing other’s to assist although I have allowed my sister to
do things, shocking I know. I feel if I
ask for help I am giving into the disease and it has won but that thinking
which got me thru round 1 in 08 with the cancer, is not doing so well against
the latest battle. And unlike my mother
my health is far more complicated and is challenging to the doctor’s.
It is frustrating and hard to explain to people what it
feels like to have your immune system that is supposed to help fight off
sickness is fighting and attacking healthy cells. My teeth are literally crumbling due to the
severe dry mouth as my glands have been pretty much destroyed, as has the tear
ducts in my eyes which are now operating at like 23%. My joints ache sometimes one; many or all the
muscles ache, and fatigue ravage my body.
I could sleep 10 hours but when I wake the body is stiff, the joints
ache it takes hours for the body to loosen but the fatigue lingers hampering whatever
plans I had. A fog often clouds my mind,
making it harder to focus and having a memory that is not as sharp as it use to
be. For a while my creativeness and
organization was adverse affected from the disease and meds but the predisone
has given that back to me for now.
A simple trip to the grocery store can wipe out all energy I
have for the day. I literally have to
map out what I need to get done in a day something that seems menial or easy to
the average person for me can be time consuming and hard for me. Even climbing the stairs is a task in its
self. There is so much I want to do but
I literately can’t and it aggravates the crap out of me. Slowly starting with my chemo I have finally
let some family help, by coming with me but there is sometimes I just want to
do it myself. What many don’t
understand and some do that in order to recharge I like to close myself out and
not think about anything but what I am doing playing on the computer, working
my hobbies or watching tv. I do like
mingle with family and friends but I also like solitude. I guess it comes from being the youngest in
the family, while everyone was at school I was the only one home, luckily I was
creative and had no issues playing by myself or reading the entire Encyclopedia
Britannica in the closet. Yes I actually
read the encyclopedia A thru Z, I was the kid who got her license and take a
guess at what place I drove to the most…..the County Library I think I hold the
record for most books checked out, back then it was the only place that you can
rent VHS movies.
off to see if I can get a few more winks since the pain has been corralled for the time being.
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