Embracing life with chronic pain and illnesses.

Posts tagged ‘illness’

Living with Chronic Pain Conditions

Words cannot explain the feeling of pain throughout the body…day and night. No positions help relieve.

Hard to express the feelings of dealing with this every day…minute…hour…month…year. It is all consuming!

I praise God for strength that is given to make it through the day. I focus on my family…wonderful Hubby, son and step son!

It is so unreal! Why so much pain and suffering? Yet you Our Lord went through so much more!

I praise God for each day and enjoy every moment with everyone!

Loss and Dispair

I am reeling from the news of my sister-in-law passing yesterday.

I am a jungle of feelings, lost and torn.

Having to call my Son to give him the news. Not being face to face to hold him as he cried.

Knowing he will see is Uncle soon helps.

We just cry out “WHY”!

Nightly Prayer

I can feel your presence

After praying or struggling with thoughts

That peace that surrounds like a warm blanket

Calming and allowing for some sleep.

Images will come to mind

Flashes from moments in the past

Pictures from life on canvas

Reassurance of the path now treading.

Realizing that this experience will help others

Praying for the lives that will be touched

A quiet peace prevails during turmoil

I just instinctively hold tight to my rock.

We have our thoughts about our path

The direction we intend our lives to go.

Yet God often has something else in mind

So embrace His direction and be thankful.

© Stacey deSoto — 2019

Let’s Own It

Here’s to all of you with chronic illnesses and conditions! During this latest flare (Fibromyalgia, Polyarthralgia, Piriformis Syndrome, IBS-C) plus additional infections (bacterial vaginosis and yeast infection), I looked at myself in the mirror and simply said:

“I am going to make sick look good!”

My chronic conditions have taken enough! I will embrace my “new” fragile self and continue to thank God every day for his strength and courage to allow Him to be seen through my weaknesses.

Week One — Cymbalta Free

What a whirlwind this past week has been! I have experienced electric shocks and electric zaps (a slow-motion form of the fast shocks), intense nausea, insomnia followed by sleeping all day –unable to wake, thick brain fog, inability to use the correct words when attempting to speak…not to mention the symptoms of my conditions thrown into the mix!!

Yesterday was the worst for pain that I have ever experienced. Yes…you read that right!  Mere words cannot relay the reality, yet I must try.  It is SO important that we know and absolutely believe that we are not alone in dealing with our hidden illnesses/conditions.

Yesterday brought tears to me eyes, truly crying because the pain was so extensive, so overbearing, so excruciating. Every single inch of my body was screaming at the top of its lungs: exaggerated pain from touch (clothing, slight breeze from the ceiling fan), Tinnitus volume turned up on high, stabbing and throbbing sensations coursing up and down my legs.  It was hard to differentiate from the symptoms of my Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/Neuralgia/IBS-D/etc. and those produced by the absence of the Cymbalta.

This morning brought a huge sigh of relief!  There is a true difference in my body today.  I am experiencing the symptoms of my conditions…albeit they are still higher than my “normal”, would be categorized as a “Fibro Flare”…yet I feel that they will slowly settle…settle enough for my Pain Specialist to make further adjustments as needed to my pain pump.

What a rough ride! I am sure that I will still have some issues arise, however, it is uplifting to know that the first week following the last dosage is the most difficult. One step at a time…one day at a time.

 

Living “With” Fibromyalgia

Receiving the diagnosis of Fibromyalgia often takes a long time.  Every other illness/condition must be ruled out, or added to, our list of diagnoses.  After all, Fibro is rarely a lone diagnosis; it can be the primary or secondary, irregardless, the diagnosis of Fibro is a life changing event.

There are many ways that those with Fibro are treated…antidepressants, pain medications, alternative therapies (like acupuncture), chiropractic care, etc.  Some of us have extremely hypersensitive systems that greatly restrict what our medical team can prescribe or do for us.

Fibro does not manifest itself the same in each person; it can range from a slight inconvenience to overwhelming…meaning some can manage Fibro and continue with a normal life, whereas others are forced to quite jobs and become homebound.

There are 100 symptoms of Fibro.  Just as some people experience a handful of symptoms, others experience 25 – 50,  and still others will experience close to, if not reaching, all 100!  These symptoms do not hit all at once…the symptoms of Fibro can change on a daily, weekly, sometimes hourly basis.

When diagnosed with Fibro, we often fight our condition.  It is a challenge to learn how to deal with the symptoms, that can be overwhelming….fatigue, burning, numbness, tingling, brain fog, headache, stabbing, throbbing, cramping, muscle weakness, etc.

It also takes time to truly understand that Fibro is a condition that will not go away…there is no cure…the symptoms can improve and then flare at any given time.  Sometimes we can understand what we did to cause a flare, other times we can not make any sense of it.

We do eventually come to terms with our condition.  We learn to live with Fibro.  We accept the life changes it has forced us to make…we learn how to limit our activity and maximize rest in order to minimize our symptoms.  We see that we our definition of living has changed to adapt to our condition.

First Shower

When I got home and was able to enjoy my first shower since my pain pump surgery, I had a few things come to mind.

If you are lucky like me, you have a walk-in, handicap shower (complete with the extra support bars…inside and out…as well as a seat or bench and floor mat). If you do not, or have not purchased some safety items (like a seat and added handrails)….do so before attempting a shower!  Otherwise, you will need to have someone there to assist you.

Plan to take your time…there is no need to rush any step! And set a simple goal, like washing your hair or shaving your underarms (if applicable). Just the feel of the water is a huge boost for having only sponge baths for two or so weeks!!

Have your comfy clothes laid out to put on…and rest afterwards. A lot of energy is used in the shower…not to mention all the energy used going to the doctor appointment earlier in the day.

Don’t worry about any “finishing touches” (like lotion)…the only item I suggest is deodorant to complete the endeavor. For many of us, the dry skin can be driving you crazy!  Just remember…there will be time after a nap to put some lotion on your arms!

What a huge accomplishment for the day… now sit back and relax!

The Dark Side of Pain

The side of chronic pain that is difficult to talk about…to me it is also the hardest to admit! It is the darkness that is lurking at the corner of my mind…forever watching and waiting for the chance to pounce…to take over.

It wants to rob us of our relationships…our confidence…our strength…our fadark_street_195913ith…

This dark shadow that we sometimes view in the mirror looking back at us can have many names…depression, despair, failure, guilt.

It is that dark negativity that threatens to suck the very life out of us…to disrupt any hope of regaining a sense of normalcy…to destroy our relationships.

It happens to each of us…whether we want to admit it or not. It will attack over and over…always at a time that we are mentally weak.  Those times when we are in the midst of a flare…when we have not been sleeping…when brain fog is at its thickest…when are finances are stretched to the limit…when our closest relationships are tested, tried and hanging by a thread…

Inevitably it will overwhelm us…it will muddle our thinking…it will suck us down into the darkest depths…it will overtake who we are…

Do NOT allow these times to dictate who you are!  We are human…we are going to spend time in the dark…however, this is only temporary. It will NOT last! It does not mean that we have lost our faith…that we have given up the fight…that our closest relationships are forever broken…

It is at this time that we hit bottom…we cry out in the depths of our despair…begging God to help…to have mercy…to forgive us…to strengthen us…

We then rise to the surface from the depths of the darkness…to once again find our inner strength…to embrace those close relationships…to acknowledge and accept our new selves…

God Is Good

This can be misconstrued…

The statement “God Is Good.”

God is beyond the human definition 

Of “Virtuous, Right, Kind, Benevolent.”

Yet he is those things and more.

Omniscient, omnipresent 

The Alpha and Omega

Truly…the beginning and the end.

Through prayer and study

We open ourselves to His workings,

We learn to listen to His Will

By the quiet voice

Of the Holy Ghost

Who dwells within us.

As we still our busy minds

Take time to focus

To earnestly listen.

Our Heaven Father is present

He is always watching.

It is up to us

To choose His path

To share His love and compassion.

By choosing to follow

His only begotten Son, Jesus Christ,

We are reminded

God is good.

We see this

In the actions of others,

Through the power of prayers

Those answered and those unanswered. 

With faith we press forward

We diligently seek ways to serve,

To share our hope,

And our many blessings

From our Heavenly Father above. 

Blemish

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The shadow on the mountain is not from the clouds….it is a temporary blemish caused by fire.  This “blemish” will give way to fresh growth with the first rain…

So much like life!  We go through trials and tribulations…sometimes feeling like we are fighting and scraping against massive storms…

Yet our struggles will give way…just as the burned ground will yield new growth…

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