Embracing life with chronic pain and illnesses.

Posts tagged ‘Christian’

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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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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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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Prayer Warriors

I understand that not everyone believes in God or in prayer; however, I am a strong believer.  There have just been things that I have experienced that could be explained no other way.

We often ask our friends and family to pray for us.  There is comfort in knowing that saint-jude-1606173_1280there are prayers being made on our behalf as we deal with crises, illnesses, chronic health conditions, sicknesses, surgeries, etc.  Yet we often sell ourselves short on all of the prayers sources available to us.

Being Catholic, there are so many Saints that are able to pray for us.  We do not pray to them; we ask them to pray for us…just like our friends and family.  Further we can always ask those dearly departed family and friends to pray for us as well.  Before you know it, there is a swell of prayers being raised to assist us in our time of need.

praying-hands-2535750_1280Of course, none of this takes place of our
personal prayers that are placed to our Heavenly Father through Jesus Christ.  There is a calming influence as we “unload” confess wrong doings, express our concerns, pains, sadness…as well as all that we are thankful for.

As we express ourselves, we are provided the opportunity to send up a “thank you” for all of those that have said prayers for us…and ask for Heavenly Father’s blessings for them also!

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Breathtaking 

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It’s Okay!

I awake in the early hours

To the throbbing and stabbing

Coursing through my body

I take leave to crawl into a hot bath

…It’s Okay!

As we watch a favorite program

Sleep overtakes me

Unable to keep eyes open

I have no strength to fight

…It’s Okay!

Plans are made

To spend time with friends

Nap taken and extra rest

Do not prevent a flare

…It’s Okay!

Apologies sent

No need for self doubt

There will be other chances

Our family and friends understand

…It’s Okay!

Hidden conditions are in control

Our bodies dictate actions

We are forced to be patient

To live within the invisible boundaries

…It’s Okay!

There are times we cry

We battle with frustration

We struggle with isolation

We wrestle with guilt

…It’s Okay!

We cry out to God

For His peace and comfort

We hold tightly onto our Faith

Knowing our path is fraught with boulders

…It’s Okay!

We deal with thick brain fog

With vision that can blur

Often unable to remember

Or use incorrect words

…It’s Okay!

 

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It Is On! – Pain Pump Trial

For anyone following or reading my past blogs, you know the tremendous disappointment that I have been through in trying to get a pain pump trial approved. Thanks to a very dedicated pain specialist and his staff, I will finally have this opportunity!

This coming Tuesday, April 25, I will have the pain pump trial! My pain specialist will inject the medication he has selected into my spine to see if it will help! The good news is that I have been told that I will know right away if it will make a difference or not.

Prep is the usual request…no eating or drinking after midnight the night before. I will be allowed to take one of my pain meds in the morning to ease my discomfort for the trip as we will have to travel about an hour to the location of the procedure.

Once the injection is done, we will remain for about 3-4 hours for observation. Then I will be released to come home, where I am to have someone with me for the next 24 hours.

I have been told that the injection can last from a few hours to a couple of days. Of course, each person reacts differently. Again, I am excited that it should be easy to tell if it is going to work or not.

So far my body has cooperated…I have not had any infections, no head colds…any of which would have forced us to reschedule.

I will write more about the procedure and its results next week!

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Nagging

Miriam-Webster’s definition “to irritate by constant scolding or urging”.

Now let us see, as we turn the mind’s eye inward,

I see the perfect parallel to our path with pain.

We are under the constant scourge

The overbearing pressure

With the constant knowing

That we are no longer in control.

It is not by our own volition

For we did not seek this fight

Nor did we ask for his assistance

Yet here we are, in league and alongside.

We are driven to depths unknown

We see and experience well beyond most

Yet we are driven to continue

To press forward, to endure.

Our path often misunderstood

For no-one except one of us

Can truly catch, or grasp, the meaning

Of our relationship with Pain.

For ours is a hidden path

One that is misunderstood

To bear what is cloaked

Unseen by the many.

We are charged to share

To shine, even a momentary light

To the hidden culprit

Who is urging us forward

Displaying our weakest moments to all.

It is our companion

Our ever present guide

Upon this path we did not seek

This that sets us a part from others.

It is our relationship with Pain

Our hidden struggle

That has forged a strong bond

No longer against….but with.

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Two Steps Backward

2017 has proven to be a rough year so far!  The arctic front that came through almost two months ago wreaked havoc on me resulting in a nasty flare.  Then with the change of insurance, there were challenges with getting Cymbalta approved…leaving me with the experience of going cold turkey…two weeks of intense withdrawal symptoms on top of the Fibromyalgia symptoms.  This followed by a severe bladder infection.

I did have a bright spot! Insurance had said yes to the pain pump…so I was looking forward to a pain pump trial at the end of this week. That is, until this morning.

I received a call from my pain specialist’s office….expecting it to be the final instructions prior to the trial.  Unfortunately, I was to receive the news that insurance had approved the pain pump….but they denied the medication. What?!?!?!?  Yes…the medication was denied.

My specialist’s office is approaching different manufacturers to attempt to find assistance for me so that we could go forward with the trial….after all, you have to be able to get the medication in order for the pain pump to be useful! LOL

Needless to say, it was another sinking moment. That too familiar, wind out of the sails feeling…it really does seem that for each step forward I am taking two steps backward.

My faith is strong. I know that if I am meant to have this opportunity the pieces will eventually fall into place! For the time being, I will appreciate the medications that I am able to take.

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