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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!

 

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!

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.

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.

Dry Tears

The incredible stabbing pain

Coursing through my groin

Burning as with flames

Eagerly licking the dry wood

Growing higher and hotter…

Thinking is muddled

As distraction is impossible 

No measure of stillness

No medication can calm

The overwhelming sensations…

I cannot hide the grimaces

Moans escape on their own

For I am not aware that I made them

As the searing knives slice my flesh

And the ice picks pierce through…

Tears are not falling

Dry eyes hide the truth

That which is hidden from sight

No image depicts the war

That wages within…

If only the pain 

Could be captured on X-ray or MRI

To be shown as the cruel dictator it is

The thief that has taken so much

Yet is never satisfied with its spoils…

To hope for a less painful tomorrow 

Not knowing what will come

Grasping for breath to attempt to dispel

The downward spiral 

Of a body out of control…

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.

Lessons of Chronic Pain

I have learned so much in dealing with chronic pain…whether it be Pelvic Floor Syndrome, Rectal Prolapse, Spastic Sphincter, Fibromyalgia, Chronic Pain Disorder, IBS-D, Polyarthralgia, Colostomy, Hysterectomy, Benign Tumors, fluid build-up, Peristomal Hernia…there have been many lessons.

I know that our Heavenly Father has used these illnesses/conditions to teach me many things…the lessons have not been easy…it has been a rough road that has had its many challenges…however, I have had the support of family, friends and, of course, our Heavenly Father.

I have learned:

  • To be humble
  • To allow others to do things for me
  • To say “No”
  • To be patient with myself
  • To take naps
  • To appreciate small talk
  • To not take anyone or anything for granted
  • To appreciate the view through my window
  • To enjoy a ride in the car
  • To accept my limitations
  • To understand that I cannot always follow through with our plans
  • To know that there is no way to predict how my body will feel
  • To know that I can choose my attitude
  • To better appreciate time in prayer
  • To take more time to listen
  • To prepare simple meals
  • To ask for help
  • To smile no matter how I feel
  • To always appreciate a hug or gentle touch (no matter how much it hurts)
  • To become my own medical advocate
  • To speak up for others with similar conditions
  • To never give up
  • To see the best in those around me
  • To encourage others
  • To be sincere
  • To use my wheelchair
  • To use my walker
  • To use electric carts
  • To see medication as a tool to help improve my quality of life

I know that there are many more…my mind now draws a blank…

Each step we take…to allow others to do for us…to utilize all the tools that we have been given…is a step in improving our mental health, our relationships, and our confidence.  Our bodies may fail us; however, our faith can keep us strong.

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