It is hard to explain to people why you cannot go with the
flow any more or just jump up on a whim to go to a get together. Honestly it is hard for me to explain why I
do what I do but I am doing what is best for my mind body and soul. Flares
can sneak up on you especially when your suppressed immune system is desperately
trying to fend off an infection. For
the most part I slept out cold from 2 amish to 11 am, then had to go out and
get some food so I can have some energy.
I then did my daily exercise which involves walking around the woods and
sometimes cleaning up sections, today it was about an hour, really it was only
picking up limbs and cutting some vines.
I should have listened to my body when it said Knock, Knock, You need to
Stop. Nope my dumbass keeps going knowing
that I needed to have energy to wash clothes and dishes. For some reason Freaking Silverware
disappears and damn we use spoons way too much, it seems they are always in the
sink dirty.
My equilibrium seems to be off it has been for a little over
a week, luckily I have wither had my walking stick or have been able to grab
myself to prevent me from falling. I am
not sure if is the Sjogren’s attacking my ears or is the eyes or combo of eyes
and ears. Cause sometimes if I move my
head to fast my eyes have issued focusing and it causes dizziness and a trip to
the porcelain god. I am hoping that it
is just the Sjogren’s, I am emailing my Oncologist, to let her know of the equilibrium
issues. I also had issues holding and
trying to use pliers to get a broken light bulb out of a lamp (don’t ask it is
the 3rd time I have down this).
Today as soon as I got back in from my adventure a wavy of drowsiness
hit, then a throbbing pain behind my left eye.
Lights on Lights off which one will help relieve whatever black cloud that
surrounds me. Move and the joints feel
better, continue to walk and pain radiates from everything. Even a simple touch or leaning on the arm of
the sofa is painful. Basically any part
of the body is sore to the touch; any area that has been operated on has even
more pain. Then there is the temperature
controls hot, cold, hot my body has issues regulating and I keep getting a heat rash in the same place my right underarm. Waves of nausea, struggling to keep the eyes
open, closing the eyes for a quick nap, ok more like closing the eye toil the
wave of nausea passes. I can already
start to hear some crackling in my lungs, and my sinus are draining down the back
of my throat, I am coughing up some of gook that is draining down. The last time I had this it lead to a bad case
of walking pneumonia.
Since I already overdid it I decided to knock out the dishes
and laundry, while doing laundry Zeus was stuck outside, I decided to let him in
at 9pm even though I still had one more load.
Normally if I am the only one home he is nice instead of being an ass…yeah
right. As usual his highness only came
in half way meaning I had to drop a piece of cheese to get him in the rest of
the way. I slowly went to unbuckle the
leash and I heard that muttering growl. Luckily my relaxes was on point at that moment
allowing me to step back quickly when his ass jumped up, but I had the bribe of
all bribes the golden cheese.
He was
fine after getting his cheese allowing me to finish up my once a month laundry
affair. For those who don’t know my and
Zeus have a love hate relationship, I have bestowed the name of Lord Jackass of
the dogs upon him. He loved me once when
I first moved back while we were revamping the garage to an apartment I stayed
in the main house meaning me and Zeus saw a lot of one another. Then I moved into the garage and got a Kitten
name Riley aka Queen RileyCoyote. Therefore
Lord Jackass no longer likes me unless I am the only one around.
As I am typing sharp
stinging pain is shooting up my fingers, and my body feels like it was in fight
with UFC Champ Holly Holm. Bones, muscles and joint are all aching from the
arthritis to the Sjogren’s and freaking fibromyalgia. I can
feel the inflammation running rapid, move in a certain way and you will hear a
pop. The pop gives a short release of
pressure from of the joints, though it is very short lived as the fluid builds
back up. I seriously need to find a
massage therapist that has experience with Cancer and Sjogren’s patients.
Every person is different in how they handle their cancer
and flares from Sjogren’s each symptom has to be treated individual. I am unique in the fact that not only do I
have Sjogren’s and Fibro I also have chronic pain stemming from my fight with Terminal cancer that started in 2008. I have had 12 surgeries, 31
days of radiation, 2 years of muscle tightness (left side) from the breast
implants, 3 major infections, 3 rounds of chemo (a few of those rounds dosage
was increased due to my lack of side effects) all this was a 2 year
period. Doctor's will even admit that they don't know what the repercussions wll be Why? Simple put by what the doctor's said, "You're 29 and not suppose to be Stage IV" then "Their is no Protocol for someone your age with Stage IV so we are going to have to make up the protocol as we go along" Recently some researches overseas have discover what chemo drugs cause Chemo Brain and I had one of them. Extreme Fatigue and along with Chemo is a royal pain in my behind.
Today my symptoms required a quite stress free zone that is
warm and cozy with a bowl of mac and cheese.
Many don’t realize that I enjoy solitude especially when I am not
feeling good and that I need to be told in advance of events. Quiet solitude
is what I enjoy though I would like to join family and friends out on the town
or outside but majority of the time that isn’t in the cards. It doesn’t mean I am being anti-social if you
want to talk to me IM on facebook or text me, if I am having a bad day it may
take a day or two for me to reply but I will.
Me and talking on phones isn’t happening unless I have to talk to my
doctor’s. I despise talking on phones
that and my voice box can’t handle talking, my voice will start crackling then
I will lose my voice entirely.
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