Stage IV Breast Cancer Triple Negative, Brac 1+, Sjogren
’s syndrome, Raynaud's phenomenon and now fibromyalgia all attacking my
body. With each one come’s more
medications and changes in food intake and habits to adjust the pains and limitation
each one brings.
As a child I remember looking forward to the county
fair and the one game I always seemed to win at it was a big roulette board
with a bunch of holes and a little mouse, you place your coins on a color the
sketchy looking dude would spin the wheel and then let the mouse out. To this day I still have the matching bears I
won one for me and one for Carrie, that is when the prizes where actually high quality
unlike today. That game reminds of my
life today everyday is like spinning a roulette wheel you
have no idea what if any flares you will have.
Flares I can hear…Huh? Flares are a term used for the auto immune
disorder I am fighting that decided to attack any number of systems or body
parts. The glands in my mouth are a
constant giving and what makes things crazy is water makes my mouth feel like
cotton, while soda doesn’t…crazy huh.
Now it seems even more things are been attacked and more often, it has
been almost a week waking up to my hands in a position some of my cousins will
remember as a child when I was about to scratch the shit out of them cause they
pissed me off….So basically it looks like I am about to claw someone and when I
stretch them they hurt like hell and feel swollen most of the time it is
between 3 am and 5 am. It is not the
only thing hurting; I crawl out of bed in the dark lighted by the TV in the
Den, find my pain meds, take em and crawl back in bed. If I was on my back, I have to flip to my
stomach, in an attempt to distribute the pain.
I was put back on one drug that has allowed me to actually go to sleep at
a normal hour, and another one to control fibromyalgia. I have been fighting extreme fatigue since
Christmas which is partly due to Sjogren’s but apparently I have fibromyalgia too….huh
you ask again well……..
“Fatigue with fibromyalgia is described as
crippling, exhausting, and flu-like. You may
experience fatigue on arising, even after hours of bed rest. And many people
with fibromyalgia have disturbances in deep-level or restful sleep, so the
fatigue they feel is not easy to treat.” http://www.webmd.com/fibromyalgia/default.htm
For those that don’t know here is a recap of Sjogren’s: What is Sjögren's
syndrome?
“Sjögren's syndrome is an inflammatory disease that can affect many
different parts of the body, but most often affects the tear and saliva glands.
Patients with this condition may notice irritation, a gritty feeling, or
painful burning in the eyes. Dry mouth (or difficulty eating dry foods) and
swelling of the glands around the face and neck are also common. Some patients
experience dryness in the nasal passages, throat, vagina and skin. Swallowing
difficulty and symptoms of acid reflux are also common.
“Primary” Sjögren's syndrome occurs in people with no other rheumatologic
disease. “Secondary” Sjögren's occurs in people who have another rheumatologic
disease, most often
systemic lupus erythematosus and
rheumatoid arthritis.
Most of the complications of Sjögren's syndrome occur because of decreased
tears and saliva. Patients with dry eyes are at increased risk for infections
around the eye and may have damage to the cornea. Dry mouth may cause an
increase in dental decay, gingivitis (gum inflammation), and oral yeast
infections (thrush) that may cause pain and burning. Some patients have
episodes of painful swelling in the saliva glands around the face.
Complications in other parts of the body can occur. Pain and stiffness in
the joints with mild swelling may occur in some patients, even in those without
rheumatoid arthritis or
lupus. Rashes on the arms and legs related to inflammation in
small blood vessels (vasculitis) and inflammation in the lungs, liver, and
kidney may occur rarely and be difficult to diagnose. Numbness, tingling, and
weakness also have been described in some patients.”
http://www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/Sj%C3%B6gren_s_Syndrome/
Like many in the same boat denial is bliss but there comes a point when you realize
you’re not super human and your body can’t handle what it could do previously.
Not only
do I have to battle fatigue from Cancer Treatment/10 surgeries in 2 year
period/Sjogren’s Syndrome/Fibromyalgia, but I also have to deal with the
lasting effects of Chemo on the Brain aka Chemo Brain, then there is Fibro Fog
and the interaction of some of my meds which can cause some forgetfulness, you
think you have done something and come to find out u didn’t.
From
http://chronicfatigue.about.com/od/symptoms/a/brainfog.htm
Brain
Fog Symptoms Fibromyalgia
Symptoms of brain fog can range from
mild to severe. They frequently vary from day to day, and not everyone has all
of them. Symptoms include:
- Word use & recall: Difficulty recalling known words, use of incorrect
words, slow recall of names.
- Short-term memory problems: Forgetfulness, inability to remember what's read or
heard.
- Directional disorientation: Not recognizing familiar surroundings, easily becoming
lost, and having trouble recalling where things are.
- Multitasking difficulties: Inability to pay attention to more than one thing,
forgetfulness of original task when distracted.
- Confusion & trouble concentrating Trouble processing information easily distracted.
- Math/number difficulties: Difficulty performing simple math, remembering
sequences, transposing numbers, trouble remembering numbers.
Chemo
Brain
“Post-chemotherapy
cognitive impairment
(PCCI) (also known as chemotherapy-induced cognitive dysfunction,
chemo brain, or chemo fog) describes the cognitive
impairment that can result from chemotherapy
treatment. Approximately 20–30% of people who undergo chemotherapy experience
some level of post-chemotherapy cognitive impairment. The phenomenon first came
to light because of the large number of breast cancer survivors who complained
of changes in memory, fluency, and other cognitive abilities that impeded their
ability to function as they had pre-chemotherapy.” http://en.wikipedia.org/wiki/Post-chemotherapy_cognitive_impairment
It is t-minus 3 weeks till that dreaded 3 month scan and the pain and fatigue has only increased even with several days off work..ugh
