Embracing life with chronic pain and illnesses.

Posts tagged ‘hidden illnesses’

Loss

As my body calms from the latest Fibro Flare with additional infections that I am prone to have, I am riding an emotional roller coaster.

I know that I am not alone…

We arise each day to slight differences in our symptoms. Our hidden illnesses and conditions exacerbate our pollen/tree/etc. allergies, or rather overly sensitivity to said allergies.  The beauty of Spring comes full during May…flowers, trees with blossoms, bees buzzing, birds chirping…

I am hit with emotions…

April is coming to a close…May is on the horizon.

I used to find myself reminded of the short rhyme — “April showers bring May flowers”…this is especially true of the Pacific Northwest.  I look out the window to see the snow loosing its grip on the mountain and see the many buds on the trees outside.  Yes, May is approaching quickly…too quickly…

This roller coaster of emotions is not new…it has changed over time…it will continue to impact in different ways.

I am not alone in feeling this sense of loss…raw emotion…tears welling…memories are stirred…

I do not want to be reminded…

I could feel your presence yesterday afternoon…I was given the greatest relief of my stresses/worries. I was powerfully overwhelmed by the greatest peace. I had to smile! I could hear my sister’s voice… “You are such a Dork!  Remember that you handed the keys to God. Now step back and listen.”

You always knew what to say…accented of course by the eye roll…or the slight throw back of the head…

We will relive those emotions associated with our loss and Heaven’s gain…

We will each celebrate the memory of your life…my dearest sister, Carrie Murray…while we embrace those close to us.

Love you, forever and always, Sis!

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chronic pain, hidden conditions, hidden illness

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Don’t Underestimate the “Tools” Provided

In the early morning hours while saying a prayer, images were brought to mind.  It was as if I was watching a slide show highlighting the path of chronic illness that I have been traveling.  So empowering and providing such a tremendous peace, that I must share!

With spot light in hand, God provided a glimpse…a “bird’s eye” view of my path.  It was like looking at a map.  I could see that with each boulder, rock slide, downed tree, or gaping hole there was a small, hand drawn box.  The boxes ranged in vicinity to the obstacles…sometimes it was next to the obstacle, sometimes it was a mile…yet with EACH impediment there was a box associated with it.

This personalized Isaiah 64:8 — “But now, O LORD, thou art our father; we are the clay, and thou our potter; and we all are the work of thy hand.”

These boxes were the many “tools” that have been given to me!  I am truly humbled and overwhelmed as I ponder this revelation…friendships, medications, Bible verses, change in attitude, phone calls, songs, surprise visits, text messages…

Some of these “tools” reappear to demonstrate how some are repurposed like my hernia belt that my husband had modified for me due to my Colostomy.  This belt is now providing some relief to the Sacroiliac joint that is inflamed as I await the appointment for a steroid injection to reduce symptoms.

As I await results from additional testing, I am thankful for the “tools” that God has granted to me, especially for my family, friends, and medical team.

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chronic pain, hidden conditions, hidden illness

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A Glimpse of the Unseen

Chronic illness and pain often leaves us feeling like we are driving a hazardous road in the blackest of nights in blinding snow.

I hear the tumultuous waves crashing nearby. My knuckles are white as I clinch the steering wheel ever tighter.

My body is overwhelmed, yet again, with increased stabbing pain and extremely overly sensitive skin…I am counting hours to my appointment tomorrow. A much needed refill to my pain pump and discussion of my latest MRI.

In the early morning hours, as I laid in bed feeling the pain ramping up, I prayed for a touch of relief…tears could not help but fall. I was granted a little more than an hour’s fitful sleep during which I was given an awesome dream.

I dreamt that I was clinging as tightly as I could to a rock as a storm raged around me…pounding pain, large hail stones striking exposed skin, winds whipping and tearing around me…every pore seemed to be screaming as the pain within was rising to the symphony around me. Then I opened my eyes to see that I was clinging to Jesus, his back taking the brunt of the forces.

I awoke with a renewed sense of hope…looking forward to tomorrow’s appointment…knowing that I am truly not alone…that my prayers are being heard.

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chronic pain, hidden conditions, hidden illness

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Morning Majesty

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Viewing the awesome landscape of the early morning with the chorus of “Amazing Grace” playing in my mind…

“Amazing Grace, how sweet the sound,
That saved a wretch like me.
I once was lost but now am found,
Was blind, but now I see.”

The gift of a new day with just a hint of God’s power and majesty on display.

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chronic pain, hidden conditions, hidden illness

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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.

 

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Awake?!?!

The beauty of the sky

The myriad of colors

The sounds of life abound

Even with the ever ringing in the ears…

It is as if I had been in a lifetime slumber

My senses forever dulled

Reaching upwards for help

While overwhelmed in quicksand…

Illness strips us of the familiar

We are thrust into the unknown

Each step taken as with a blindfold

Hands outstretched groping in darkness…

Our medical teams struggle

Conditions and illnesses so misunderstood

Further muddled by myriad of symptoms

Each of us so different from the other…

We search for answers

Yet try as we might

We find health elusive

Stripped from us and locked away

Secreted in the darkest, farthest corner…

We are tried and tested in ways indescribable

As words are a shallow testament

To the inner symptoms that abound

Forever changing and challenging…

 

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The Beacon

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The beautiful lighthouse at Newport, Oregon. Brings back such awesome memories! A weekend of baseball shared with my Sis!

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The Unexpected Joy

While in town last week after my doctor appointment, my husband and son went into a family owned feed store. They happened to have this beautiful, white female boxer pup…with the most brilliant blue eyes…they kept talking about her.

When I woke up Monday morning, I felt some strength and had a bit of focus. The last two weeks of not feeling well, Fibro flares, IBS-C flares, and head cold….then finally starting my new medication dosage (which completely knocked my out)….had finally loosened their grip for a brief time.

I took advantage….and once hubby was a work and our son at school….I snuck into town…and with the help of the wonderful, courteous staff…this beautiful pup was loaded up and ready to head to her new home!

Needless to say, our son was ecstatic!  Our lab was pleased to have a little one around…and Sadie has blended right into the family.

It has been such a blessing! She has brought wonderful distraction…endless snuggles…and many laughs as she and Chrly wrestle and play.

It has truly helped increase the joy of this wondrous Christmas Season!

Merry Christmas Everyone!

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Give Yourself a Break

It has been a long time…a very long time since I have given myself permission to remain in my pajamas for the day. Yet that is exactly what I did this morning!

The electric shocks continue to course through my body…my ears are ringing so loudly! Still! The oversensitivity of my chest is SO overwhelming! Words cannot express the pain that is permeating throughout my entire body…coursing through…causing waves of nausea.

Oh the joy of living with Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/and the like!

I am doing what is SO difficult for each of us…I am giving myself a break!  My symptoms are in control now…however, this is temporary!  It may be tomorrow…the day after…or next week…it will come though!

I will awake one day soon with the notable absence of these terrifying shocks…the incredible “out of body” feeling…the deafening, high pitched screaming in my ears…

My only focus today…is rest…do not feel obligated…enjoy the comfort of pajamas…of a warm fire on a cold day…

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Decisions

Having diagnoses of Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, IBS-D, Pelvic Floor Syndrome and probably undiagnosed Chronic Fatigue Syndrome and Restless Leg Syndrome, pose daily conscious decisions.

I must consider what may be happening on any given day to determine if I should expend the energy to take a shower…or to simply wet my hair in order to save the energy for a ride to town with my hubby and son.

The feeling of my skin dictates what I am able to wear. After all, wearing a long sleeve shirt vs. a short sleeve with loose sweater/sweatshirt, will either further irritate my overly sensitive chest area and/or increase the stabbing and burning in my arms.

The idea of shoes that have to be tied are, for the most part, out of the question.  I must choose slip on sandals or boots. The combination of having to use my fingers to tie and the effort/energy to put on tennis shoes is too much!

There are many other decisions that we must make each and every day in order to manage our symptoms. (Believe me, I am using the word “manage” VERY loosely!)

The even harder decisions are those that we make with our health care provider(s).  Deciding what type or combinations of medications we will use to try to reign in symptoms. We also must continue to monitor how these medications are doing. We must speak up and talk with our health care provider(s) when we need to increase dosages or to let them know that something is not working for us.  We also have to discuss new symptoms and the changes in current symptoms.

With all this “thinking” we are also dealing with the brain fog that disorients us…makes remembering simple things, like brushing our teeth, to important things like taking our medication(s) a challenge on its own!

We must rely upon whatever “tool or tools” work best for each of us.  Some find sticky notes helpful, some use lists….for me, I have a great Fibro App on my phone that tracks my meds, sleep patterns, symptoms…..and I also use a Note App to jot down questions for my doctor.

I also truly appreciate the fact that my hubby does his best to schedule work around my doctor appointments. He asks the questions that I forget…he interjects and comments on his view of the medications…so helpful to me and to my health care providers.

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