Embracing life with chronic pain and illnesses.

Posts tagged ‘prayer’

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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“Baby Steps”

My Pain Specialist keeps telling me “baby steps”.  I must focus on each day alone…allowing my body to set the pace.  Having a goal (i.e. 4 laps of the house) is good…yet must taper with where body actually is (i.e. 2 laps of house a day).

zcXeXAxgiRemember, each activity that is performed during the day…each one is exercise. These include getting dressed, fixing breakfast, cleaning dishes or just prepping them for dishwasher, feeding dogs, brushing teeth, washing face, shower (when enough strength), letting dogs out, walking lap of house, laundry (non shower days), heating lunch, prepping/making dinner…

Balanced with the necessary breaks — sitting in chair with ice, using ball for feet, laying on the couch, prayer time, reading, watching TV, computer time…

adult affection baby casual

Photo by Pixabay on Pexels.com

God placed the perfect image into my mind!  I was taking my first steps…true “baby steps”…my little hands grasping large, strong hands.  My steps erratic and unsure…just driven by instinct to push through.

“Baby steps” are just that! The small steps taken by toddlers not slow paced adult steps! This insight has provided such a sense of calm, as I am further reassured that Heavenly Father is with me, assisting with my chronic health battles.

I azcXeXAxgim no longer viewing my activity level and where I am currently based upon “normal” perspective.  I am not recovering from an injury.  I have permanent health conditions that severely impact my quality of life.

Viewing my situation with this “new normal” in mind has truly lightened my load!

 

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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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“Squirrel” Brain

This title makes me smile

As I attempt to relay my reality.

Complex sentences, vibrant words

I can see and feel…yet not express.

Words jumbled and sentences started

To be left hanging as I slowly shake my head.

Fibromyalgia and many of its “companions”

Overload my brain causing words to collide.

I pray for grace and strength

As I struggle to remain calm.

Images of “how it used to be”

Flashing in my mind’s eye like lightning.

Simple conversation and odd pauses

Exasperated by stress…good or bad.

Typing helps bridge this divide

As words appear on screen…

At the onset I had given myself permission

To write as if there were no grammatical rules.

My mind goes to our son when a Tiger Scout

An active mind so easily distracted…

Another mother summed it up — “Squirrel”

Attention span gone, the hunt is on.

Flighty and crafty, darting about

On the search for one of its stashes.

I smile when our teenager gently corrects

Better yet when he supplies the word I am unable to find.

Chronic illnesses/conditions force reform

Reminded of how we are but clay in the Potter’s hand.

Let go the frustration

Dive deeper into prayer…

Handing over the reigns

Trusting with our heart.

Deep breath taken

And laugh at the squirrel.

© Stacey deSoto — 2018

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Don’t Underestimate the “Tools” Provided

In the early morning hours while saying a prayer, images were brought to mind.  It was as if I was watching a slide show highlighting the path of chronic illness that I have been traveling.  So empowering and providing such a tremendous peace, that I must share!

With spot light in hand, God provided a glimpse…a “bird’s eye” view of my path.  It was like looking at a map.  I could see that with each boulder, rock slide, downed tree, or gaping hole there was a small, hand drawn box.  The boxes ranged in vicinity to the obstacles…sometimes it was next to the obstacle, sometimes it was a mile…yet with EACH impediment there was a box associated with it.

This personalized Isaiah 64:8 — “But now, O LORD, thou art our father; we are the clay, and thou our potter; and we all are the work of thy hand.”

These boxes were the many “tools” that have been given to me!  I am truly humbled and overwhelmed as I ponder this revelation…friendships, medications, Bible verses, change in attitude, phone calls, songs, surprise visits, text messages…

Some of these “tools” reappear to demonstrate how some are repurposed like my hernia belt that my husband had modified for me due to my Colostomy.  This belt is now providing some relief to the Sacroiliac joint that is inflamed as I await the appointment for a steroid injection to reduce symptoms.

As I await results from additional testing, I am thankful for the “tools” that God has granted to me, especially for my family, friends, and medical team.

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A Glimpse of the Unseen

Chronic illness and pain often leaves us feeling like we are driving a hazardous road in the blackest of nights in blinding snow.

I hear the tumultuous waves crashing nearby. My knuckles are white as I clinch the steering wheel ever tighter.

My body is overwhelmed, yet again, with increased stabbing pain and extremely overly sensitive skin…I am counting hours to my appointment tomorrow. A much needed refill to my pain pump and discussion of my latest MRI.

In the early morning hours, as I laid in bed feeling the pain ramping up, I prayed for a touch of relief…tears could not help but fall. I was granted a little more than an hour’s fitful sleep during which I was given an awesome dream.

I dreamt that I was clinging as tightly as I could to a rock as a storm raged around me…pounding pain, large hail stones striking exposed skin, winds whipping and tearing around me…every pore seemed to be screaming as the pain within was rising to the symphony around me. Then I opened my eyes to see that I was clinging to Jesus, his back taking the brunt of the forces.

I awoke with a renewed sense of hope…looking forward to tomorrow’s appointment…knowing that I am truly not alone…that my prayers are being heard.

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The Example of Job

A summary of the story of Job from SparkNotes: Bible: The Old Testament: Job reads as follows:

“He is “blameless” and “upright,” always careful to avoid doing evil (Job 1:1). One day, Satan (“the Adversary”) appears before God in heaven. God boasts to Satan about Job’s goodness, but Satan argues that Job is only good because God has blessed him abundantly. Satan challenges God that, if given permission to punish the man, Job will turn and curse God. God allows Satan to torment Job to test this bold claim, but he forbids Satan to take Job’s life in the process.”

sparknotes.com/…ldtestament/character/god

I am sure this summary brings back memories of Sunday School, sermons, church camp and/or youth group. It may raise questions in your mind that were or were not answered. It may still have that element of surrealism, confusion or doubt that was initially in our mind. After all, this is a story of a man…a normal man just like you and me…being held up as a challenge to God by Satan.

Having been primarily homebound for just over two years due to my chronic health conditions, I have had a lot of time to pray, to surf the web, to read (when Fibro Fog is not  too thick), to watch TV… Distraction has been a powerful tool to assist with my daily struggles.

I have found that my perspective of God, Satan, and Job have changed during the many years of chronic pain and the plethora of symptoms that come with Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, Neuralgia, and the like. This change of perspective  has come about because of the deepening of my Faith, of the miraculous events I have witnessed, and just the overall increase in knowledge that the journey of life has provided.

My thoughts of Job have changed from wondering how a good God allows evil and human suffering to exist or why God is so concerned with humanity while appearing to focus on our faults and punishing us to focusing more on the relationships that are in play.

Reading the story of Job with this adjustment to my mindset finds me awed by the friendship that Job had with God. Think of it! God was confident in the relationship that He had with Job!  Job was faithful in worshipping God, he prayed to God, he spoke to God — sharing his thoughts, fears, frustrations, joys, and disappointments.

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Thank You, St. Jude

Jude, also known as Judas Thaddaeus, was one of the Twelve Apostles of Jesus.

He preached the Gospel with great passion, often in the most difficult circumstances. Through the power of the Holy Spirit, he made profound differences in people’s lives as he offered them the Word of God.

The Gospel tells us that St. Jude was a brother of St. James the Less, also one of the Apostles. They are described in Matthew as the “brethren” of Jesus, probably cousins.

St-Jude-9-205x300St. Jude is traditionally depicted carrying the image of Jesus in his hand. This recalls oneof his miracles during his work spreading the Word of God.
King Abagar of Edessa asked Jesus to cure him of leprosy and sent an artist to bring him a drawing of Jesus. Impressed with Abagar’s great faith, Jesus pressed His face on a cloth, leaving the image of His face on it. He gave the cloth to St. Jude, who took the image to Abagar and cured him.

In the Catholic Church, St. Jude is the Patron Saint of Hope and impossible causes. Those who are in despair or distraught over finances or other circumstance in life are encouraged to ask St. Jude to pray for them.

Like so many times in the past, I can be too stubborn for my own good! LOL  I finally came to my senses when we were in nasty financial situation. My husband, who is self-employed, did not have work lined up and the monthly bills looming. (I am still battling for my disability, of course! At least a Hearing date has been set!!)

I asked St. Jude to pray for our financial situation.  As soon as I finished speaking to him, I heard my husband answer his phone.  He was headed out the door for a job.  The work has continued and is continuing for him.  We will be able to pay our bills this month thanks to the prayers said on our behalf by St. Jude!

Just as our friends and family pray for us, the Saints are there to speak to and to ask for their prayers as well! I now thank St. Jude each day before asking for his continued prayers.

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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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Results Are In!

The prep for the pain pump trial was very basic…just required a typical fasting…no food or drink after midnight the day prior. My pain specialist had approved a few sips with one of my meds prior to 6 am to help with the travel to the medical facility where the trial was to take place (a little over an hour drive time away from us).

I was required to have someone drive me and to have someone with me for 24 hours after the procedure. My husband was able to arrange his work schedule around those requirements.

I was very anxious of course! I did not sleep well the night before…as is always the case for me prior to a procedure.

Upon our arrival, I did not have to wait very long. My husband wheeled me back to what would be the area I would return to after the procedure. The nurse reviewed my history, asked the typical allergy to medication questions we are so used to and took my blood pressure. The nurse also placed an IV in my right hand in case I would have a reaction to the medication to be used in the injection.

The Medtronic rep then came to visit with us. We had a good discussion…he asked me questions regarding my knowledge of the upcoming procedure…we spoke about what would happen and rough time frames if the trial is successful…he was very courteous, professional and personable! There was no sense of being rushed…he wanted to make sure that all of our questions were answered.

It was then that I learned that he was my dedicated Sales Rep who would be present for the surgery if the trial was successful. He is also partnered with a clinical specialist. I was very impressed with the company structure and how Medtronic is set up to not only provide a product for those of us who have run out of options for our pain treatments, but to have a dedicated team who is assigned to us to support us…who genuinely cares.

By this time, the single pain med I had been allowed to take was quickly wearing off! I am thankful for the wonderful caring staff of my pain specialist…I could not help but be a bit grumpy!

I was taken back to the procedure/surgical room. I did not have to disrobe…just had to lie face down on the table. My back was then prepped with the typical skin cleanser…then told to expect a pricking sensation from the needle as the selected medication was injected into the epidural space. To be honest, I barely felt the needle or the injection!

I was then taken back to what would be my recovery area. I was very tired of course so I was awoken in about 45 minutes by my pain specialist to ask how I was doing. It was at that moment that I realized that I did not have pain in my feet, my right leg or hips!

Needless to say, it was completely surreal! The pain in my upper body was very present but no pain sensations were present in my lower body!!! As my pain specialist explained, he had placed the injection in the lower spine (picture an epidural) so my lower extremities were targeted. I also did not exhibit any type of adverse reactions from the medication.

We were ecstatic! The trial was going beyond our expectations! I actually walked a short distance using my wheelchair as a walker and felt ONLY the weakness of the lack of muscles in my lower body! It was exhilarating, exciting, unreal…like all birthdays and every Christmas of a lifetime being celebrated at once!

I was kept for four hours after the injection for monitoring. During that time, the nursing staff provided crackers and water to help calm my hungry tummy. They had quite a selection of snacks to choose from, so I was easily able to find something I could snack on that was within my dietary parameters.

At this point, it was just a matter of how long the relief would last. Would it last a handful of hours? Would it last a day?

On the way home, I felt the tell-tell signs that the pain was on its way back. Once home, I felt like had been hit by a Mack truck…then beaten with a baseball bat. Yet no amount of pain, could take away my elation! The pain pump trial had been a huge success!

Now I am awaiting the scheduling of the surgery!

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