Embracing life with chronic pain and illnesses.

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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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Struggle

The frustration is real even though progress is occurring. Sounds like a conundrum doesn’t it?

Injections for Sciatica have provided some limited relief…unveiling that I am also dealing with Sacroiliac involving my right leg. And, these new diagnoses have aggravated my Shingles…which also targets my right leg.

Needless to say my usual “companions” are quick to throw in their two cents…like I need to be reminded of my Fibromyalgia, Polyarthralgia, Spastic Colon, Pelvic Floor Syndrome, IBS and other conditions.

I have more to learn about the issues in my stomach that are leading to bloating and cramping (which are very scary with a colostomy); and, its interaction with my other conditions. Another diagnosis that will provide more information on how my body is “malfunctioning”.

It is frustrating to be home bound…yet, we are making progress in uncovering other conditions that have been masked by the overwhelming symptoms of Fibromyalgia and Polyarthralgia. (Thanks to my pain pump!)

It is discouraging to know that any time I leave the house it will result in a Flare. To be honest, just getting out of bed wrong can do the same!

The struggle continues…

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chronic pain, hidden conditions, hidden illness

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Living with Hidden Conditions

The most difficult part of living with hidden illnesses/conditions like Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, IBS, etc. is trying to describe our conditions to those close to us.  I created the attached PDF to demonstrate how complex these conditions and their associated symptoms are…

LivingwithHiddenIllness

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Homebound

Walls so familiar

Known by touch

As they prevent a fall

Become prison like

When confined for length of time…

There is safety here

Albeit superficial

As it cannot prevent dizziness

The hand holds are a comfort

To catch and to prevent harm…

Eyes unfocused

Through a thick veil of fog

I shuffle to my chair

Sunshine brightens the room…pexels-photo-48828

The warmth of the rays

Reaching through the window

Allow my mind’s eye

To envision the shore…

I hear the water

In the fast flowing stream

Rushing past, racing ahead

Free and untethered…

Wave upon wave has hit

Driving my backwards

The sun offers hope

Its warmth reassurance

As I slowly move ahead…

A knock on the door

The bright smile of a friend

The exchange of hugs

To sit and talk

The walls dissolve…

No longer a prison

The walls provide safety

To allow much needed rest

To help increase strength

Albeit slowly…

Mindset is recharged

Embracing the colors

The small buds on the trees

The retreating snow

A body at peace…

 

 

 

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The “Aloneness” of Pain

The img_6916vision of the Aspens

Naked and stripped of leaves…

Intertwined with the evergreens

The Spruce, Fir and Pine…

Speak of us with chronic illness

As we interact with the healthy…

Our lives have been stripped

Of what others call “normal”…

Days once filled with activity,

With motion and movement are slowed…

Our conditions cannot be seen

As we often appear to be fine…

Our struggle is with the unseen,

That which has made a stronghold within…

Yet as the Aspen are connected,

Pain has united strangers…

Often we feel alone and separated

Because we cannot participate…

Let us empower each other

To know we are not on our own…

 

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As The “Big” Sis

I can only write and truly understand my position…as the eldest…in this case…the “Big” sister…

At first, I was hesitant and worried about a Baby Sis…having two younger brothers and being the only girl did have its advantages!  LOL

Yet…when the day came…I truly…secretly hoped for a Baby Sis….the hope of having someone to confide in…to be a best friend…to share with…to have that special bond with…

God, in his perfect wisdom, blessed me with you!  My precious and most dear Baby Sis!

I am blessed to have your “twin” step up and claim me in your absence!  Yes!  Can you believe that?!?!?!

I had many hopes and dreams for myself….you and I know that I did not reach them…I was able to achieve other dreams instead….

More importantly, were all the hopes and dreams that I had for you!  The dreams of a life without the painful lessons that I had to learn….without the heartache….without the pain of never measuring up to your full potential…

My utmost dream for you was to have the opportunity to be loved for who you are…to be fully and completely loved for you…..to have you achieve your dreams….

I was so proud of how you were able to attend Johns Hopkins University! You excelled and had amazing experiences there! You were even offered a position to remain…and you remained steadfast in your decision to return to Oregon.

You struggled and were able to find a great position with Roseburg Forest Products….you excelled!  You were able to purchase your first home….you showed me up in every way!  LOL  You could paint….you could cut a straight line…you showed that you were SO multi-skilled!!!

I was SO proud of you!  I know now that I did not express to you how proud I truly was!  Yet…I know you understood….you felt it….

I also knew that you held a secret….something very close to your heart….

I know you were not wanting to reveal…yet…finally…you did….

You knew that I was protective….that I wanted only the best for you….so you tried to hide some things….yet…I could see….

I just wish you could have seen all of your dreams to fruition!

Yet…I know that you did….you lived life to the fullest….you followed your own path….you shared strength with others….you were such a good friend to so many….

I who have had few friends….and am not good with people….you…who had many friends…and was SO good with others!!!!

My only wish now…..other than having you back in a physical form…is to…somehow be able to connect with others as you!!!

I miss you…SO much!

Love you….forever…and always!!!

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PRECIOUS MEMORIES!!!

 

The sudden death of my sister has been overwhelming!  My parents and brothers would completely agree!  I can only attempt to share her life by posting a “tatoo”on my truck!  

I hope that ALL that see this….stop to remember…..everyone that is close to him/her!  To know that family and friends are NOT to be taken for granted!  We do NOT know how much time we are gifted!

 

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Managing Day to Day

I  am sure that I am not the first nor the last dealing with long-term health issues that pushes too hard….to far…at times.  Then of course…we do as I am now…”paying the piper”….sitting with the heating pad….knowing it really isn’t doing much….just not looking forward to the weight of a blanket on the side that cannot be touched.

I would do it again in a heart beat!  I want to meet my obligations at work….there are set things that I cannot hand off.  Then the most important part of the day comes after work!  Watching my son play baseball!  I know we will be disrupted by another hospital stay all to soon…I just cannot bear missing a moment cheering…..watching….participating!

I know tonight will bring little sleep.  I will turn in into prayer and meditation time….afterall…just relaxing will help to provide energy for tomorrow.  Tomorrow will be more low-key….no game…no important meetings at work…..just the best part of the evening…Cub Scouts!  Smiling happy faces…the boys laughing and enjoying each other…learning and growing!

This is the daily struggle…the day to day that we “manage”……as we as parents…..manage our illness/sickness/pain…..our children do not realize the powerful role THEY play.  Our kids are our inspiration…..our joy….our angels….that assist us each day.  Overpowering the bad with the good….providing the “misdirection” that we need to lose focus on what we ourselves are dealing with….taking us “above and beyond”.

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Regarding Family and Friends

Family and friends often have questions and want to know how they can help.  Depending upon your comfort level and the individual, sharing your experience…how you feel….what tests are coming up….can benefit both you and those around you.

I have found such strength from the support of my family and friends! We don’t have to worry about our son….there are family and close friends who will pick him up and make sure he gets to Church Class or Cub Scouts or Baseball practice when my husband has to take me to doctor appointments.

Sometimes we opt to take our son to my appointment…..especially when a new doctor is involved.  I think it is important that he meet the doctor and have a chance to ask questions that he might have.  We are selective, of course, there are some discussions that you don’t want your child to overhear….you want to have a chance to get the information and then relay an “update” to your child in a way that best fits your child.

Our son has been very curious….he asks a lot of questions….this latest round, however, as I have mentioned has been the hardest for him.  His latest comment was “so glad that I did not have tumors”.  He has relaxed some and we have talked about my overreactive nerves.  He is excited that I have new medicine….and we continue to reinforce that I have the best medical team helping to make me better as fast as they can.

I must admit I really struggled with asking for help….still trying to be super Mom.  I have found though, that it has helped me to let go….to let others that are close to us help.  Our son has enjoyed going over to his friend’s house….or being picked up and taken to an event….it is a treat for him!  It has helped me to have the opportunity to get a little more rest.  Especially since I have to continue to work.

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