Embracing life with chronic pain and illnesses.

Posts tagged ‘grief’

Precious Memories

It was 5 years ago today that my parents received the call. Carrie and Billy were in an accident. Carrie died at the scene and Billy was in hospital. All I could think of was getting to the hospital to see both of them! Just wanted to give Billy hugs and talk or sit.

Ally was able to meet me at the hospital to go in and see Carrie. Very emotional yet so reassuring! We could both tell that she is in heaven and just a shell remains.

Her Celebration of life and burial were amazing! All of those whose lives she had touch! Those from the law firm where she had been hired arrived in a bus! So many friends and family! Truly touched me.

Fast forward to today.

Our hearts will feel heavy today as someone so dear so endearing would be taken from us.

Yet Carrie’s legacy is living on through our memories, pictures, stories and her Memorial Scholarship awarded each year by University of Oregon Law School in her name. Students learn about Carrie and for 3 years now have been award the scholarship in her honor. Each one is touched by Carrie and so thankful!

I love seeing her picture and that smile! I will always hear her laugh and voice in my heart. She is part of us and always be so!

Love you forever and always Dear CareBear…


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

Out of the Blue

It strikes without cause

No trigger is known

Yet the tears fall…

The feeling of emptiness 

Of inconsolable loss

No reason…no rhyme…

Overwhelming feelings

Yearnings…missing you…

Desperately trying to fathom

Why this now? 

So random…unable to control

The tears flow…

Is this part of healing?

Of surviving in a world

Void of your physical presence?

The need to hear your voice

To feel your embrace

To hear your laugh…

This path of sorrow

Is steep and treacherous

Wrought with falling rocks

And deep holes…

Navigating is not easy

A challenge for sure

With sorrowful eyes

Prayers raised to Heaven

Seeking comfort

And guidance…

Missing You!

Version 2

It seems like only yesterday

I got home from school

To find Mom frantically searching for Dad

You were READY to enter this world.

I was anxious and nervous

Would I have another brother or

Would I have a Baby Sister?

We knew the answer would be soon.

The first time I saw you

Lying in your bassinet

So small, so fragile

Yet beautiful and full of life

We were all in love at first sight!

I taped ribbons to your head

So frustrated that others

Would refer to you as a boy

My mind screaming “Would a boy wear pink?!?!?!”

You were my shadow

Forever beside me….never giving any space

Especially when we visited Grandparents!

I can still feel you curled up against my back

No matter what I did

You would sleep NO other way.

Oh! To relive those precious days!

My heart aches

Tears flow

I cannot help it.

You had only just admitted

To the most wonderful event

Of the terrific man in your life.

I…we….were so proud of your accomplishments

First in Class as Graduate of Law School

Making huge impressions on your new law firm

The promise of such a bright future!

Yet…God chose to call you home…

The Angel’s hand you did grasp

To rise into the light

The peace…the tranquility

The overwhelming love

In being united with all those gone before

To be present before our Lord….our God.

I once again see those beautiful blue eyes

That bright smile

The kiss upon the precious forehead

Of the shell that had housed

My most, beautiful, wonderful, precious, Baby Sis!


 Common reactions to chronic pain over time include fear, frustration, anger, depression, and anxiety. These feelings can make it harder to manage chronic pain, especially if you use alcohol or drugs to deal with your symptoms.—————————–

For those of you living day to day with chronic pain/illness….the above words can make you laugh!

Which one of us dealing with chronic pain, can say that we have not felt frustrated, angry, depressed or anxious?!?!  It is a trick question! For that I am certain!!

Living with a chronic illness/condition and seeing how it impacts those around you on a daily basis is the hardest challenge of our lives! 

I see how hard my health condition is on my husband and son! I know that no 11-year-old should have to deal with what our son sees each and every day. 

The hardest part is knowing that out son has never had the joy of a healthy Mom!

He only knows of having a sick Mom….that we do the best we can but there is always the underlying worry of having a sick Mom!

For those outside to write a comment like the above….it is disgusting!  

You have no idea of the daily struggle that those of us living with chronic illnesses/conditions…

If we should choose to allow ourselves a drink or to allow ourselves a pain pill….you cannot judge. 

I just pray that those of us struggling do not give in to alcohol or drugs to cover our daily pain. 

There are times we use these tools to calm our situation….although they will do nothing for our fight. But a brief respite we might find!  For that? Thank you….

No I am not supporting substance abuse! Just want to bring into perspective the life of one trapped in constant pain!

Believe me….being the one that is in constant pain does not hurt nearly as much as watching my loved ones endure my daily pain and limitations!

Twice the Grief

I read an interesting article regarding Fibromyalgia and Chronic Fatigue Syndrome….the fact that these are life changing conditions….these greatly misunderstood chronic pain conditions are “for life”…..

In simple terms….the person we were before the diagnoses no longer exists….these conditions permanently determine our actions….in my case I have had to quit my job, relocate my family to a different state….all in the hope that in the long run….my symptoms will settle down to allow a simple life that is interrupted with occasional flares.

My hopes are simple….to be able to do a short walk….to be able to drive to the store…these will take time (I am prepared for the long haul)…..

Yet along this path…I have also lost my Baby Sis (as many of you who follow my blogs know)……so I am not only dealing with the grief of having lost my Sis and best friend…..I am grieving the loss of me! The me that used to be able to run….to hike….to drive….to take care of others….to fish….to hunt (yes…I have not given this up….just much more difficult as a Handicapped Hunter who must stay in the rig)…

This knowledge has really hit home! It has helped me to better understand another level to the stresses that my body is dealing with….the additional weight that is facilitating the continuation of the severity of my symptoms.

I hope that this “new” knowledge will help me to be more patient with myself…to better understand how to slow my world down so that I can come out the other side with limitations and less debilitation.

Mobility Frustration

It is going to happen sooner or later….it happened to me today….

I am dealing with Fibromyalgia/Polyarthralgia/Chronic Pain Disorder not to mention IBS…and found on-line the 100 point CFS/FM scoring system. (I score 15…..which means I am severely limited….hardly mobile….walk to the restroom and back to my chair tires me out…..so when out and about I must use a wheelchair.)

I do not feel good enough to drive most of the time so rely upon my husband to do the driving….then I rely upon my hubby or son to push me in my wheelchair.

Don’t get me wrong! I am so thankful for my chair! It has allowed me to go out and about….I can go to the stores with my hubby and son or other family members.

The down side….is the loss of independence that I have been dealing with. I cannot just get in the car and go for a drive (those days are few and far between…and then it is a short few minute drive)…..Christmas is coming….how can I be sneaky? LOL

Our last stop for the day was the grocery store….I rattled off the few items we needed…..however, when we reached the baking aisle our son grabbed the one item we needed….my husband turned me around just as I had a thought “wonder if they have the special flour I need”. Of course, I got frustrated….

Just a simple thought….I could not act upon it without having assistance! That is the frustration of losing mobility due to these “hidden” chronic conditions!

These conditions do not go away…..there is hope for improvement….but I will never be the person that I was before….I hope and will continue to work with my doctors to improve to become the “best that I can be”! Just a small goal of being able to go to the grocery store on my own without being worn out for two days!

Frustration with our limitations is inevitable….and even if we are able to master it most of the time….there will come those moments when it will win! Not for long though! Be sure to apologize and move your thoughts beyond where you are at at the given moment….it might mean doing further reading or visiting your favorite on-line support group or blog…..

Switch gears and appreciate those around you who are there for you…..give yourself permission to rest…..to be patient to discover and to build your new self.

Loss and Chronic Pain

Dealing with chronic pain is difficult…..dealing with the loss of someone so close is hard…..

It is hard to find words to describe the quagmire that I am in now. I I have pushed through….and been living with chronic illness and chronic pain for so long!

My Sis, Carrie, was such a huge support! She was always there for me! She was always my rock!

My chronic pain disorder, polyarthralgia and fibromyalgia are still providing huge challenges….as previously stated….no one I have seen yet can offer any true options……

I do not expect answers…..I have had TOO many situations in which I have been the “unique”….the “one in a million” case….or as my Sis would say…..”you are SO special”!!!!

I just hope to have some semblance of “normalcy” or control….just enough to have the opportunity to walk with my husband and son…..

I do NOT expect to be able to run again (although I am not willing to give up that dream)!

Yet…I am wrestling with the pain…the gut wrenching loss of no long having my Baby Sis……being the one that was supposed to always be there and protect her…..

The twisted paths we weave! My Sis was enjoying the best part of her life! She was happy and making a difference! She touched MORE lives than most! Of that I am SO proud!!!

I guess I am just trying to say…that LIFE is HARD! God opens doors…and provides paths for us to walk…..it is then up to us to go through those doors and to walk…..to persevere….to NOT lose our faith! It is our unique challenge to move forward….to keep taking one step after another….


As I sit and watch the falling leaves…….blown to and fro in the wind…..

I see the light dusting of snow on the mountain….like white dust….

The deep reds….golds…oranges…..

Brilliant color surrounds…….branches that are now exposed….

Just like life……the changing colors…..represent the changing stages of our lives….

The path…the road that we each travel….

It is NOT one that we have chosen….

It is somehow chosen for us…..

Miss You!

Version 2 I miss you, Sis!  Each and every day!  You have left a huge void….a giant hole…..within so many!  I am SO proud to have been your big Sis!  Love you!  Forever…and ALWAYS!!!!

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