Embracing life with chronic pain and illnesses.

Posts tagged ‘multiple surgeries’

Prayer

Prayer…it can be such an integral part of our lives.  I know for me, prayer is a vital life line.  It allows me to hand over my fears…frustrations…disappointments…concerns…as well as all that I am thankful for.

We learn many formal prayers….”The Lord’s Prayer”….”The Glory Be”…as Catholics, many more are learned…”The Hail Mary”…”The Apostles Creed”…”The Divine Praises”… I am sure several others have come to your mind.

We also learn to pray informally.  We are often told to use “The Lord’s Prayer” as a template for our own prayers…we are encouraged to use our own words…to speak to God as if he was in the room for us…like we would speak to a friend.

Often we can find ourselves in a rut…saying similar words as if by rote…going through the motions…not really allowing ourselves to open up and speak with our hearts not just our minds.

Many of us were taught the following pattern for prayer (referred to as A.C.T.S.):

Adoration – “Praise be to God!” -Psalms 68:35
Tell God how much you appreciate Him.

Confession – “If we confess our sins, He is faithful and just, and will forgive us our sins and purify us from all unrighteousness.” -1 John 1:9
Tell Him where you have fallen short. Be as specific as possible.

Thanksgiving – Always “glorify him with thanksgiving” -Psalms 69:30
Thank God for His love, His faithfulness, His patience…express gratitude to Heavenly Father, Jesus Christ and the Holy Spirit.

Supplication – “Make your requests known to God.” -Philippians 4:6
Tell God what is on your mind…whether it be for yourself…a family member…a friend…you can also just speak thoughts that you are having.

I know that I often pray informally…yet there are many times…especially when Fibro Fog is thick…or my mind is wandering all over…I find comfort in reciting one of the formal prayers…even if I cannot get all the words correct…it helps me to relax…to shift my focus.

Our Heavenly Father knows our hearts…He knows our needs…He wants us to commune with Him.  Whatever type of prayer…as long as it is from the heart…will be heard.

Phantom Pain

I am amazed by the power of our brains!  The fact that our brain fully “remembers” that functional body part that has been removed…that it can make us feel the pain and/or other sensations that existed when that body part was a part of us.

The fact that those neural transmitters can at random bring all those sensations to “life”. I am thankful that these sensations truly do fade over time.  I now deal with them them only when I have been greatly stressed or extremely worn out, and they fade faster now.

I had read about phantom pain…and for a while…I did not believe that it would ever let up!  LOL  Yet…it does…so if you are struggling with this…know…that it will improve!

Medication Update

After battling insurance and going back and forth with my pain specialist’s office, I was finally able to have the extended release of the medication my specialist wanted me on filled!

The entire ordeal was VERY exhausting…both mentally and physically!  The relief I felt once I held that bottle in my hands was overwhelming!

I am anxious to get the next few days under my belt to see how my body reacts to this new schedule.  As expected, I have been much more sleepy than normal…unable to keep eyes open…so curling up in bed for unscheduled naps.  This is how my body reacts the first 4-5 days…should then settle in to a better routine.

My pain specialist has also supplied additional information to insurance regarding the pain pump trial. That battle is taking quite some time. My insurance will change up come January so will be interesting to see if we have to start from zero or be able to resubmit the package they have assembled to the new insurance.

I am still amazed at how insurance dictates the treatments/therapies that the doctors/specialists prescribe for their patients!  How insurance can have such power with NO relationship with us, the patients, just blows me away!

Thankful for the moment though!  I am eager to see if we might have found the right combination of medications for me…at least until we can attempt the pain pump trial.

Ringing

Ears are ringing

No escape found…

High pitched squealing

To lower buzzing…

Most days

The constant hum…

When storms approach

The sounds overwhelm…

Turn on music or TV

Something to compete…

The waves of nausea

Inevitably come…

Just as waves

Crashing against the shore…

No quiet found

Even with hands over ears…

With wishful heart

The body yearns for the storm’s passing…

Majesty

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The majesty of the Rocky Mountains

As I am blessed to view from a high meadow

Fills my heart with joy and peace.

The vision of the old homestead

Sitting silently in front of the Aspens

With the sage meadow stretching around.

The quiet stillness with no breath of breeze

Speaks of the enormity, the great expanse

Of Heavenly Father’s magnificent creation.

I am overwhelmed with emotion

My eyes drink deeply of the beauty

Taking in the vibrancy of colors.

The sudden stabbing in my hands

Disturbs my state of mental bliss

As pain courses through my body.

The mountains form a strong backdrop

I feel a tear fall from my eye

As I once again lose myself in the vision.

Pain Med…

It has been a while since I blogged….time has gotten away from me! With my body adjusting to the pain med which has taken a slight edge off (yeah!)….extreme brain fog…registering our son for 8th Grade (YIKES)….and going out of town for a long weekend….followed by the inevitable “week after”….LOL

The pain med did help with the usual increased flare that follows the time away. I found that I was more tired and dealt with much more nausea than I have in the past. My body was very heavy and tired…

I had a follow up with my pain specialist…we have established the next step! I will continue to use the pain med as a “band aid” until I can get in for a trial to see if a pain pump (Targeted Drug Delivery) will work for me.

I am anxious yet ready for this next step. The risks of the pain pump are outweighed by the benefits….the idea of not having my internals in distress (just part of the necessary side effect of the pain med) is huge since my IBS-D and overly sensitive intestinal tract are not pleased….

I am gimping along with the great suggestions from my GI Specialist and my Low FODMAP diet…it is just nice to think there could be an option that might work for me!

Focus

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Like a winding dirt road

Winding through mountainous terrain

The beauty of the trees

The chirping of the birds

Butterflies flying overhead

The sound of bees

As they move from flower to flower…

The shadows are slowly giving way

The brilliant blue sky

With only a hint of a slight breeze

The brilliant purple of the thistles

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Clash with the brown dry grass…

So many colors

Overwhelming all senses

While the quiet sounds

Can barely be heard above

The ringing of my ears…

The reason that I am here?

The brain fog has hidden

The initial focus is gone

Given way instead

To the beauty that surrounds…

SdeSoto

Speak Up

We can often be our own worst enemies….in a recent conversation that I had with a “new” friend…I was disappointed to hear that she knows others with Fibromyalgia; however, they do not speak about it, nor do they speak of their experiences.

I have found that by opening myself up….by speaking about my various conditions/illnesses, that I have not only helped myself, that I have also helped others around me.

My family and friends have a better understanding of what I am dealing with. Others with similar conditions have been a great source of encouragement! It is so helpful to exchange ideas, medications tried, relaxation techniques, exercise options, etc. This is also huge in reinforcing the fact that we are NOT alone!

We must also be prepared to speak up to our doctors….our specialists….it is the only way to continue to raise awareness of our hidden conditions/illnesses…by speaking up we can help direct bring attention to these little known conditions/illnesses that impact so many of us.

Self Confidence

One of the biggest challenges in addition to dealing with day to day pain is that of self confidence.  Just think about it!  We are battling constant pain…we can no longer do things we had taken for granted (anything from work to exercise to playing with our kids)…we struggle with our memory and thinking process…some of us like me, have had body alterations (for me a permanent colostomy) that we are thankful for, yet impact our body image…we look fine on the outside yet we know just how badly we are impacted by our conditions/illnesses….the list could go on and on…

The ultimate result? We can find ourselves looking in the mirror before or after a shower and find ourselves feeling hopeless…ugly…fat…you know what I mean! We each have our negative demons that we fight…

This wave of negativity usually goes away pretty quickly…sometimes we have to put a lot of effort in to the fight….other times a distraction (like hearing our children laugh) will help to snap us out of it…

I also know that our lack of confidence can be impacted by the way we dress. If you are like me, you wear loose fitting clothing…I do so because of the pain that the pressure of clothing causes on the skin as well as the fact that layers or loose clothing hide my appliance.

Just know that struggling with self confidence is normal! It is not a sign of weakness….it is part of being human! We are struggling on so many fronts it should not surprise us that our self confidence can take a beating as well!

Adrift…

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Adrift on the breeze

Shifting and flowing

Driven by an unseen force

That can be

Gentle…violent

Intermittent…constant

Or anything in between…

A glimpse at the clouds

Reflects a life with pain…

 

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