G ain and/or keep motivated to hang-on by thinking about, considering, & create plans w/ my kids.
R emind self that experience tells me it will eventually change/improve some.
O riginate plans of what I’d like to do when I begin to feel better, when symptoms are tolerable.
U nderstand, learn to better recognize and avoid triggers when possible.
N ot everything has a solution, sometimes just have to deal, breathe, live through.
D on’t fight too hard, forcing or thinking failure may actually make matters worse.
E liminate self-destruction, if self-care or coping strategies aren’t working, don’t let it bring me down.
D oing best I can in the moment, so be patient and forgiving to self, stop the blaming of self.
During flares and/or low points.
Helpful free resource I discovered on twitter to help with relaxation that may be beneficial to others as well. https://t.co/QVGhvEwZLZ?amp=1
Each day, I hook up to my tube and machine since eating creates too much pain and symptoms.
Nutritional fuel for my body.
Tubes can be used for various medical conditions and all age groups.
Every 3-6 months I return to Interventional Radiology for a tube exchange.
Rates, volume, and types of formula feeds can be altered based on each individuals' needs.
A feeding tube does not mean death. They can improve one's quality of life.
Liquid formula enters my body through a tube in my abdomen directly into my small intestine.
Necessary to keep me and other people alive.
Unfortunately, there are some dangers and complications with enteral nutrition.
Types vary from long danglers to low profile buttons with extensions.
Reduces vitamin deficiencies and some symptoms caused by "normal" eating.
It can be carried in a backpack or rolled around on a pole.
Tubes don't cure diseases & aren't successful for everyone. Some need IV feeds, TPN, instead.
Irritation of skin caused by stomach acid leakage around the tube site can occur.
Opportunity to increase nutritional lab values, absorption, and possibly energy.
Nasal tubes or abdominal tubes are available to enter stomach and/or small intestines.
I do NOT write for sympathy. I do NOT seek sympathy from anyone.
I do NOT write for attention. I do NOT seek attention from anyone.
I simply write to record and process my personal experiences
and post in the off chance that they may help someone else.
I simply strive to discover a better quality of life;
to figure out a way to help my body feel better while living with illness.
If you do not understand and accept that,
then step out of my way, taking your false accusations and judgements.
The morning was fairly normal,
when compared to my normal at least.
My fatigue and nausea, more pronounced,
but in my experience they are always a beast.
I rode with my son on an errand
looking for where at his school he's to park.
Not knowing what lay just ahead
was my body preparing to spark.
I infused my regular lactated ringers
using my PICC line, like every other day.
Fueling my body with needed fluids
to keep my dehydration at bay.
But hiding beneath my skin
were embers that were no longer dormant.
Out of nowhere chills overcame me
with pain in my legs a boiling torment.
The internal blaze combusted
My body radiating such heat.
Intense freezing yet also burning
Fever scorching over 103
Unable to sit still or even to walk
I was in such tormentuous misery.
An infection was clearly simmering,
uncontrolled wildfire burning within me.
I tried denial and avoidance
For at home is where I wanted to stay.
I didn't want another line infection
My mind unsuccessfully tried to will it away.
But, my family saw through my anguish
urged me to get promptly checked out.
Sluggishly I made my way
for another hospitalization, no doubt.
Look at the outer me,
Do I look fine, to you?
In some ways I am fine,
but not fine as well.
Moving around the house,
tube feeds for nutrition,
Couple sips or spoonfuls here or there.
So yes I may be fine,
But not fine as well.
Do you see what's beneath the cover,
what's in my soul,
the scars upon my body,
physically and deep within?
Yes, I may be fine,
But not fine as well.
Have you experienced my pain,
my nausea, or constant fatigue?
Silently trying to avoid outsiders
from seeing my inner struggles.
Yes, I may appear fine,
But not fine as well.
Have you ever given up,
not wanting to bother talking to a doctor?
Already knowing there's no relief to be found,
no new way to describe or explain.
Yes, I may act fine,
But, I'm not fine as well.
So when you see me
smiling, laughing, joking, loving
Know that I'm also
crying, struggling, pretending, trying.
As sometimes I may be fine,
But, also not fine as well.
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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