Embracing life with chronic pain and illnesses.

Posts tagged ‘Colostomy’

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!

Loss and Dispair

I am reeling from the news of my sister-in-law passing yesterday.

I am a jungle of feelings, lost and torn.

Having to call my Son to give him the news. Not being face to face to hold him as he cried.

Knowing he will see is Uncle soon helps.

We just cry out “WHY”!

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.

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

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

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.

Hope

It feels like an eternity since I have written a health update!

Again, I must express my gratitude for my pain pump!  It is the reason that my Pain Specialist has been able to determine that I have Sciatica (both left and right side)…. Sacroiliac (right side)…and now Piriformis Syndrome.

A week from Monday, I will receive another injection to calm the Piriformis.  We are working towards improved function of my right leg.  I am sure many of you have dealt with the Sciatic nerve(s) acting up: burning, numbness, tingling, throbbing, stabbing, muscle spasms, etc.  My right leg from buttock to the tip of my big toe has been experiencing these symptoms along with being unresponsive at times –foot will drag or leg will not move when I tell it to.

The issues with my right leg have been a big problem for years now.  I had come to accept this as just one more thing to learn to live with…yet now more layers to my medical conditions have been uncovered.  There should actually be improvement to movement!

Struggle

The frustration is real even though progress is occurring. Sounds like a conundrum doesn’t it?

Injections for Sciatica have provided some limited relief…unveiling that I am also dealing with Sacroiliac involving my right leg. And, these new diagnoses have aggravated my Shingles…which also targets my right leg.

Needless to say my usual “companions” are quick to throw in their two cents…like I need to be reminded of my Fibromyalgia, Polyarthralgia, Spastic Colon, Pelvic Floor Syndrome, IBS and other conditions.

I have more to learn about the issues in my stomach that are leading to bloating and cramping (which are very scary with a colostomy); and, its interaction with my other conditions. Another diagnosis that will provide more information on how my body is “malfunctioning”.

It is frustrating to be home bound…yet, we are making progress in uncovering other conditions that have been masked by the overwhelming symptoms of Fibromyalgia and Polyarthralgia. (Thanks to my pain pump!)

It is discouraging to know that any time I leave the house it will result in a Flare. To be honest, just getting out of bed wrong can do the same!

The struggle continues…

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!

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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