Embracing life with chronic pain and illnesses.

Posts tagged ‘surgery’

Living with Chronic Pain Conditions

Words cannot explain the feeling of pain throughout the body…day and night. No positions help relieve.

Hard to express the feelings of dealing with this every day…minute…hour…month…year. It is all consuming!

I praise God for strength that is given to make it through the day. I focus on my family…wonderful Hubby, son and step son!

It is so unreal! Why so much pain and suffering? Yet you Our Lord went through so much more!

I praise God for each day and enjoy every moment with everyone!

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hidden conditions

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My “New” Self

Battling chronic pain conditions like Fibromyalgia, Polyarthralgia, IBS, Pelvic Floor Syndrome, Sciatica, recurring Shingles, Sacroiliac Joint Disfunction, arthritis throughout the lumbar spine area, permanent Colostomy…the list goes on…is VERY difficult.

It tests every ounce of courage, forces us to dig deeper into ourselves. Faith, family and friends are our positive partners. However we can find ourselves alone, divorced and raising our child/children on disability income.

There are times to cry and we must give ourselves permission for that. The emotional, physical and mental control can really take its toll.

We must be patient with ourselves and our new reality. The acceptance of changed bodies due to surgery or surgeries and getting older. When I first had my Colostomy there was no mention of using support belts to prevent hernia, so it was very discouraging to go through a peristomal hernia and its necessary repair. And now the need to layer up with specialized support belt or active support garments is just “a part of life”….essential to my well being.

Let’s face it ladies, we are not sure how to take that big 50! We’ve seen images of older women with their boobs to their bellies. I saw this happen to myself at 51!! It was like they had lowered themselves at least two inches! Ahh!!! Scary!! So I treated myself to some active wear sports bras. Feel better and parts stay where they should without that nasty pulling of a regular bra.

It takes time to adjust to our new living conditions…a new house, change of routine, reviewing and re-examining our budgets. There is time to do this…when our minds are alert and focused.

Thankful for the medical team who have continued to try new out of the box thoughts on my behalf. These have made life easier. Yet reinforce, I am no longer that same person. I have adapted, grown in Faith, now better understand my body and its cycles, know when to ask for help, and embrace every minute of every day.

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chronic pain, hidden conditions, hidden illness

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Nightly Prayer

I can feel your presence

After praying or struggling with thoughts

That peace that surrounds like a warm blanket

Calming and allowing for some sleep.

Images will come to mind

Flashes from moments in the past

Pictures from life on canvas

Reassurance of the path now treading.

Realizing that this experience will help others

Praying for the lives that will be touched

A quiet peace prevails during turmoil

I just instinctively hold tight to my rock.

We have our thoughts about our path

The direction we intend our lives to go.

Yet God often has something else in mind

So embrace His direction and be thankful.

© Stacey deSoto — 2019

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chronic pain, hidden conditions, hidden illness

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Silence

As the snow deepens

The silence grows

As if time is standing still…

My mind is refreshed

As this quiet seeps to my core

Banishing all doubts and fears…

The clanging in my body

Fights the stillness found within

I close my eyes to return to the calm…

The falling snow builds

My mind again quiets

The screaming in my body subsides…

Such a blessing is granted

To reaffirm Faith that is tested

My soul is stirred…

© Stacey deSoto — 2018

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chronic pain, hidden conditions, hidden illness

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Let’s Own It

Here’s to all of you with chronic illnesses and conditions! During this latest flare (Fibromyalgia, Polyarthralgia, Piriformis Syndrome, IBS-C) plus additional infections (bacterial vaginosis and yeast infection), I looked at myself in the mirror and simply said:

“I am going to make sick look good!”

My chronic conditions have taken enough! I will embrace my “new” fragile self and continue to thank God every day for his strength and courage to allow Him to be seen through my weaknesses.

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chronic pain, hidden conditions, hidden illness

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Another Tangent

As if our body’s aren’t under enough stress with our hidden illnesses and conditions, there always seems that more gets added to our plate!

I have been absent in dealing with “new” pain affecting my lower back and both legs. Results of the MRI showed Herniated discs (L4 and L5, S1 and S2) and arthritis in same area. So yes, definitely Sciatica.

I will go in for steroid injections next Wednesday. I do hope they provide relief. It would be SO nice to go back to my “usual” pain!

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chronic pain, hidden conditions, hidden illness

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A Flare Like No Other

Unrelenting pain

Coursing through every cell

The slightest touch exacerbates

Pressure from the softest cloth

Becomes a knife with serrated blade…

Skin crawling

Interrupted by nausea

Hunched over by the cramping

Right arm and shoulder on fire

My body a living pin cushion…

The light is overwhelming

Yet the darkest room offers no relief

No comfort to be found

A headache begins to form

Sensations are racing to and fro…

The intensity of symptoms

Raging and fighting…vying for attention

My brain is on overload

Waves of pain bombard me

My body sinks into the depths…

I take pause

To breathe deeply

Soft spoken words

Pleading for the slightest of relief

Peace comes to my mind…

My symptoms still enraged

As I am enveloped

By a sense of calm

Like a thick blanket

Renewing strength and focus…

 

 

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chronic pain, hidden conditions, hidden illness

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Tummy Trouble

It is amazing how far I have traveled on this path of chronic pain and illness.  The pain pump has been a major milestone!  It has given me the ability to determine where my pain and discomfort is coming from…rather than the symptoms just shouting over each other to be heard.

Almost two weeks ago, I was able to explain to my GI Specialist my abdominal issues with specific symptoms! With my complicated history which includes Pelvic Floor Syndrome, rectal prolapse, spastic colon, permanent colostomy (sigmoid colon and rectum removed), and IBS, it provided the glimpse that he needed to best determine the next step.  I will be undergoing a Gastric Emptying Scan next week to determine if my stomach is working properly…must determine just how much of my GI tract is involved.

I am anxious to find out if the malfunctions of my lower GI tract are “isolated” or if my upper GI tract is also involved.  Another crucial piece of my medical conditions will be better understood!

As so many of us with chronic conditions know, it takes time to put all pieces together.  It takes so much effort and energy to get diagnoses due to whatever symptoms are screaming the loudest!  Living with Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, Somatic Symptom Disorder, Neuralgia, Postherpetic Neuralgia, Paresthesia along with the above referenced GI disorders make determining the origin of symptoms extremely difficult.

So many years…so many doctors…so many appointments…not to mention the tests and imaging/scans!  This path of chronic illnesses and conditions is not easy…there are no easy fixes…it forces us to rediscover ourselves while it strips us of the lives we had.

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chronic pain, hidden conditions, hidden illness

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Entering a New Reality

I was right when I thought this would be the hardest step in my new reality. I am referring to coming off of Cymbalta as part of clearing my body and having the pain pump take over.

We are very close to having the pump dialed in; this next adjustment may be the last one needed. I know the conversation with my pain specialist will be an interesting one as we discuss how my body is reacting.

Now for the truth of the reality of coming off of Cymbalta. I have described this as the most difficult step…at least I had anticipated it to be. Know that words cannot describe the intensity of the symptoms. The intensity of the brain fog is greatly amplified as well making thought and speech a huge frustration!  It is so hard to focus to interact with others…the wrong words are constantly used…don’t even think about driving.

Just a handful of the symptoms that have been exaggerated by the process: Brain Fog, burning, electric shocks, numbness, difficulty walking (legs do not obey), falling (or near-falling), nausea, abdominal cramping, IBS-D flaring, throbbing pains all over, stabbing sensations all over, tinnitus, light sensitivity, sound sensitivity, irritability, skin sensitivity to touch…

I have found that normal distractions or other tactics we use to help ignore symptoms do not work. It is truly a day-to-day battle to not lose my sanity! Even with all the questions we had asked and the additional research done on-line, I was truly not prepared for the amount of energy this process would take.

I am praying throughout the day and night for help make it through this step. There is light at the end of this I know. It will be such a relief in the months ahead having this medication cleared out of my body!

Thankfully today I have a break from the electric shocks and nausea…the balance of my symptoms are doing their best to make up for those that are not present!

Just remember, if you are considering coming off a medication like Cymbalta, take the time to research, to speak with your medical team, to share information with your spouse and children…then buckle up for a hellacious ride!

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Now for the Difficult Step!

If you have been reading my blogs lately, I have been writing about my pain pump and the journey to get off oral medications.  (NOTE: I know that I will have some form of oral medication when all is said and done for flares not controlled by the pump.) I am making great success with my oral pain meds….am only using the short acting form during the day.

This past Friday, I started what will be the most difficult step…the process of getting off ofimages Cymbalta! I say this because of my “cold turkey” experience with this powerful medication; and, I know that, even with my doctors involved with this, I will most likely deal with some of those nasty symptoms.

My doctor reduced my dose from 60 mg to 30 mg.  I will be taking one pill per day for two weeks, then I will take one pill every other day for another two weeks.  After that, I will be Cymbalta free.  (At least, that is the plan!!!)

Today my body is a mess (legs stabbing/throbbing, upper right side is on burning, IBS-D is flaring –cramping and knots, extreme Fibro Fog, etc.) as it starts adjusting to a lower dose. Also doing my best to time my short acting pain med to offset the increased pain.

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