Swollen ileostomy stoma with pain searing through my abdomen. Strenuous painful contractions for shit (literally) not coming out. Testing my strength, patience, and perseverance, pushing the maximum scale level 9 or 10 easily from pain, with cold sweats, dizzy spells, and gagging from gastric uprising.
Near black outs from the pain and dehydration. Burning hot heating pad continuously against my abdominal and lower left back's skin, leaving marks behind while attempting to dull the inner torturous and horrendous pain.
Hot baths, as hot as my skin can handle, to try and soothe my aching muscles from this hidden monster within.
Standing and walking are nearly impossible as a result of the strain of pain. Massaging and squeezing the abdominal muscles with my tired worn hands to try and assist find some type of relief, even if only minimal. The conniving monster stretching, punching, slicing my insides, tormenting, shredding and butchering me from within. Literally, that is the best way I know how to describe this sickening, relentless, and persistent clawing pain. My body, stomach, and small intestines revolting, trying to send everything back up with intense waves of nausea and heaving. Assessing and questioning my resiliency throughout the day and night.
Where is this particular monster coming from? Why did it choose to reside here, within me, at this time? Is it trying to make a permanent residence, even if immensely unwelcome, or stopping by for an appalling villainous visit? Each day become more and more ghastly, loathsome, and frustrating. I swear that it can't leave soon enough! I can't help but wonder what I did to cause it's arrival or what I can do to kick it out?
I attentively and cautiously watch my body's reactions. Are there signs or signals that my body is emitting? Is there an SOS needed for emergency relief?
My ileostomy bag, which seemed to stop or cease for a few hours earlier, suddenly began emptying like crazy. Releasing lots of water and gastric juices in large volumes frequently, which is abnormal to me for sure. The good news is that I know this at least provides proof that there is not a complete obstruction.
Is it possible that I have a partial obstruction (blockage) in my small intestine or near my ileostomy? I guess there's a chance. If so, I can predict that the monster this will likely be a thief of fluids, but I have a chance to survive on my own. Praying that my body will not go down without fighting, I depend and rely on it to find the means to flood my intestines out. I know that the monster will not give up quickly. It will clasp to the walls, acting as a dam, or maybe even a demon, until eventually one of us finally concedes or surrenders.
Realizing the impact of losing essential fluids so quickly, I help supply my veins with my IV hydration fluids. Tempting my fate, trying to deal with this situation on my own instead of reaching out for possibly pointless or unnecessary help. A recurrent question that always leaves me pondering, makes me vulnerable, and often causes me to rebel against my family's well-intended opinions. My ileostomy stoma, surrounded by a tender ring of pain in all directions, with deep muscle spasms, intense cramping, and stalling pain underneath, do not give me hope of relief anytime soon. How long can this monster keep surviving within me? To what will it give? How can I destroy the destruction that it leaves in it's path?
I choose not to throw my white flag this time, choose not to call in for reinforcements, because in my mind, what would be the purpose? What could or would they actually be able to do that would end my misery any sooner?
I am aware that pain medicines are not an reliable option, at least not ones that can truly mask or end this pain. Why? I know that they can literally make matters even worse or keep the monster lingering around even longer, as they will only slow my digestive system down further. That is definitely not my desire or plan.
Fluids, thank goodness for IV fluids, I can run them at home, keeping myself hydrated, which is essential. If it weren't for them - I know that there would be no other choice but to make the dreaded emergency room or doctor visit.
My chair, my heating pad, my terms, are greatly preferred to keep me as comfortable as being completely miserable from this severe striking pain can be. I will not risk letting a doctor or nurse minimize or dismiss this hellish pain. I'd rather take my chances alone until I meet my breaking point and feel as if I have nothing, no reserves left to lose or give.
This action is not wise, and I definitely do NOT recommend or advise others to follow my path; But for me personally, it's the only path that I could accept for myself at the time.
(This was written after seven days of continuous pain. I'm still not feeling "good" by any standards, am still experiencing quite a lot more than my normal level of pain, and keeping my heating pad attached to me, but thankfully small improvements have finally begun to make an appearance. Hopefully, this monster is completely evicted soon!)
Mystery Evening, hazy and blank.
Hour or more simply forgotten.
Apparently watched TV and conversed with kids,
while snacking on Italian Ice, they thought I was alert.
When all of a sudden, my words and actions were slurred.
They couldn't understand a thing I was saying,
and noticed when standing that I was weak and unstable.
Kids told me the following morning that they had been worried,
especially when they witnessed me weak, confused, and jittery.
My daughters had called my son in to help,
scared that I'd fall since I wouldn't stay in chair as instructed.
The following morning
I tried to reflect on the night prior,
How could I be present and semi-normal with my kids,
while having no recollection of the evening at all?
I feel like a failure, even if it's not true
It's just I only want the very best for you.
You are my life, the reason I am here;
Me not being enough, is my greatest fear.
You only deserve the absolute best.
Yet are left with me, a complex mess.
Loving you full-heartedly in leaps and bounds,
But having nothing left to make you proud.
I give you my heart, I give you my all.
I promise to do so until the day I'm called.
My greatest accomplishments and blessings during my life,
Are each of you calling me MOM, which is greater than any strife.
As my body's driver, I am more familiar with my body than anyone else. I know how it feels when functioning, what my comfort levels are or are not, and understand exactly how smooth or rough the ride can be. I, along with God, determine what's most important in my life, the purposes that I strive for, and the expectations I have regarding my functionality. How I feel and the quality of my journey, may often be more important and essential, than how I actually look or what the “blue book” value an outsider may perceive that I am actually worth.
My mechanics, or doctors if you will, help me manage and develop possibilities that may help improve how I function. Just like vehicles, I have many different systems that have to work together to be effective. I have various areas to take in consideration, some requiring more attention at time than others. Sometimes the adjustments we make may help, sometimes they will be trial and error, at times the changes may even create new additional problems, but all in all we slowly continue to make small calibrations in hopes of improving my overall condition physically and internally.
In the automotive world, different fuels work better for different vehicles and burn the fuel at different rates. So doesn't it make sense that different people work better with different types of nutrition and hydration and similarly different people burn their fuel at different rates as well.
Comparable to automobiles...
If one places too much physical energy, or battery power, in controlling, maintaining, and meeting everyone else's expectations, they might drain themselves to the point where nothing is left for them to thrive on. In this case, the sole purpose of their life, the heart of the engine, which is to ride through the wind and travel along life's journey, may not be successfully accomplished. Too much energy spent on attempting to meet only medical expectations, without respecting the mental and emotional needs as well, can unfortunately come at the cost of leaving no energy available to enjoy an acceptable quality of life. Similarly, focusing only on one's emotional well-being and physical activities, whether enjoyable or not, without taking care of the medical needs (mechanics), can also create issues, as the body would not have the capability to perform efficiently.
Like a defective alternator, our mind often produces symptoms that alert us of potential problems before larger problems begin to arise. It's main job, or purpose, is to make sure that the battery, our energy, remains charged so that like a vehicle, we can function appropriately. However, if we do not carefully monitor and control the energy expenditure it can become completely depleted of energy and will not be able to keep up with the amount required to successfully function and meet even basic needs. This is why it's imperative that we do not ignore our warning signals. Eventually, this can lead to the possibility of being left alone and stranded. Additionally, it can also create a domino effect of "electrical" problems that can ultimately cause a complete breakdown.
Batteries, alternators, radios, and other vehicle components, like our bodies, can sometimes fail on their own with no warning or reason. However, there are ways that we can attempt to extend and improve the quantity and quality of our lives.
Personally, I am currently trying to return to feeling somewhat comfortable with tolerating my health, like I was prior to my latest infection. It wasn’t perfect by far! I was still dependent on IV support and tube feeds, running on low energy, and dealing with symptoms daily. But, I was also starting to figure out how to function alongside my limitations, which meant that I could also reserve and discover a little energy to enjoy life with my family. When I felt consequences from choices I made, whether it be activities missed to recharge and refuel myself or trying to do too much physically, resulting in wearing myself down, I could at least say that those moments were worth it and acceptable.
Currently, I am not always feeling like there is a “worth it” label for the struggles I’m having within my health journey. At times I'm missing the human element, losing my idea of self, and am extremely tired and frustrated because it can feel as if I am running on a hamster wheel, getting nowhere, just wearing myself completely out, for what??
I need and want a different view. I don’t want to be stuck in a wheel of hellish symptoms for nothing but worn out frustration. I don’t believe that I can continue to drive my life around and around a "roundabout". Where and how do I choose the right road to lead me in a tolerable direction?
It just seems as if the harder I try, the sooner I lose energy for anything else because all of my energy expenditure is used to keep riding around and around in circles. How do I determine when it's time to take the risk of trying a new road or simply stopping for a break?
I’m okay with taking time to recharge my engine, if it means I get some time to explore, move, and live life with my family as a result. I don’t want to drain every bit of energy, potential, and life away to be left with nothing. After a while the jump starts will not work anymore. Eventually, if I don’t appreciate and listen to MY body, all aspects of it, I will become completely useless and hopeless, forgotten and neglected, possibly even thrown in a local scrap yard. What then?
Unlike with vehicles, it's not as if I can calmly and confidently walk into a store and buy a new battery or alternator. Furthermore, I can not trade in my body for a brand new one. It's MY responsibility to take care of myself and all of my imperfections, the best way possible, with the help of my family and doctors.
Where do I go from here?
What do I envision my future to be like?
I can question my medical issues, trivialize, ignore, avoid, or tolerate them,
but that isn't all my life is meant to be about.
Life is much more complex than just my symptoms. Will I ever physically return to feeling good on most days? Will I ever be able to nourish my body with the nutrition and hydration that it needs on my own, without requiring the use of medical devices, lines, and pumps?
I don't know, possibly, but also likely not, but shouldn't that be okay?
Does it matter how I fuel my body, as long as it gets fueled?
Should I have to keep putting myself through torturous and painful attempts,
just to try and be more normal in the eyes of others?
It's such a tricky slope.
At times, I honestly want to stop everything for a break and to masquerade in normalcy,
if even only for a few moments.
Of course, it always seems to catch back up to me. The consequences I face can be harsh, physically and emotionally. BUT, at least during those moments it's from my choice and fault.
Sometimes, I put way too much effort at following doctor orders and trying to be an "ideal" patient, that I end up losing myself. I'm not saying that I shouldn't listen to or consider what my doctors say, but if it doesn't help or it if creates more pain and problems, then I have to figure out how to be REAL and concentrate on LIVING my life the best I can as ME. No one knows how it feels to live inside of my body better than me - so it's my duty to try my best to listen to what my body tells me.
I guess it's kind-of comparable to the automotive world.
I mean, for a vehicle to function properly and efficiently,
it has to have not only a charged battery, but also an alternator to help keep it running smoothly.
Have you ever payed attention at the various vehicles that surround you throughout each day?
Ever considered the story that they tell?
Some appear to be perfect with all the bells and whistles, but have only experienced the same predictable routes day after day to maintain their pristine image. Other cars appearing to be perfect, may actually run like crap, if they even crank up at all, simply because the owner failed to take care of the soul of the car. Instead, too much time, attention, and effort may have been placed on their visual appearance or internal mechanics were avoided or ignored.
On the other hand, there are some vehicles missing bumpers, with dents and dings on the outside. Maybe even spots of rust. The interior may have holes in the seat cushions or cracks in a window. Likely, many of the "extras" that are desirable, but not essential, may not be present, but the vehicle runs like a charm. The purpose of the vehicle is still successfully achieved in the eyes of the driver.
Then of course, there are some vehicles that are somewhere in the middle. They started out like every other vehicle, shiny and new with zero miles of experience. They function well for the most part, but may need more attention or support along the way. Maybe a tune up has been required more often than most, maybe some recalls requiring corrections, tires or other materials possibly replaced, a defective radio or aggravating imperfections ignored, an engine rebuilt, or so on. However, the SOUL of the vehicle is strengthened and treasured for the many memories that it has been a part of and for the positive experiences it has helped provide.
I envision myself as being in the "middle" category. My personal body being like a vehicle that is no where near perfect, requires more adjustments and tune-ups than I'd prefer, but also is full of valuable memories it's helped create along my journeys. Spills on the floor from unexpected mishaps, scratches on the exterior from bumps and accidents along the way, replacement parts for areas that experience malfunctions, and creative alterations to maximize performance. Memories of traveling with and visiting loved ones, special events like graduations, marriages, new babies, and vacations appreciated. A vehicle filled with sounds of singing, crying, laughter, worry, and yes even disagreements, but also the comfort of knowing that whatever the outside looks like, whatever negativity my body has experienced, that I have survived and remained true with all of the memorable history and all of my soul. My body, a vehicle that may not be the most dependable or beautiful one on the road, a vehicle that other's can't comprehend or understand how it functions, (including me at times), but a vehicle that keeps on traveling in search of more positive and memorable adventures with my family. A vehicle that maybe one day will discover the secrets behind how to make it work more effectively and reliably on the inside or, who knows, maybe one day my vehicle will be revitalized, better than ever anticipated.
Therefore, my current focus is not only on my outward appearance, but most importantly, on my overall functionability. Some days will be a bumpier ride than others, some much more daunting, but thankfully there will also be some days that I'm able to cruise along in the wind.
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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