Embracing life with chronic pain and illnesses.

Posts tagged ‘catholic families’

The Impact of Loss

Our son was given an assignment in English this week. His teacher asked that the class “brain storm” and then write a story…a true story…about something that taught them some type of a moral lesson.  It was to have conflict, climax, etc.

He was very frustrated with this assignment.  “Mom…my life is flat….other classmates came up with ideas right away…”

I started mentioning ideas…hoping to spark his creative interest…

“What about our move?”

“No!” he said emphatically.  Tears welling in his eyes.

“Why not?” I asked knowing the answer.

“Because it involves Aunt Carrie. I have to keep that inside.” His tearful response.

I reassured him that it is okay to cry….it is okay to miss his Aunt…that I and many others miss her very much…each and every day.  I also reassured him that talking about it helps. And, that I understood why he would not want to use that as a topic in class.

After some more discussion, he hit upon his go cart that he had made with his Dad…perfect story!  He was able to immediately map out his thoughts for how he could present it in story form…showing how the process had strengthened his self confidence.

Yes, it has been one year and five months since that life changing day. The day that forever changed so many lives!

Last night reminded me again, of how challenging the sudden death of someone so close is for our children.  They do not have the resources that we as adults have…the experiences…the maturity to muddle their way through.

It is vitally important that we take time…take the time sit with them…to allow them to talk, sit in silence, or cry.  We have to help them…to guide them through the grieving process.

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Pain Med…

It has been a while since I blogged….time has gotten away from me! With my body adjusting to the pain med which has taken a slight edge off (yeah!)….extreme brain fog…registering our son for 8th Grade (YIKES)….and going out of town for a long weekend….followed by the inevitable “week after”….LOL

The pain med did help with the usual increased flare that follows the time away. I found that I was more tired and dealt with much more nausea than I have in the past. My body was very heavy and tired…

I had a follow up with my pain specialist…we have established the next step! I will continue to use the pain med as a “band aid” until I can get in for a trial to see if a pain pump (Targeted Drug Delivery) will work for me.

I am anxious yet ready for this next step. The risks of the pain pump are outweighed by the benefits….the idea of not having my internals in distress (just part of the necessary side effect of the pain med) is huge since my IBS-D and overly sensitive intestinal tract are not pleased….

I am gimping along with the great suggestions from my GI Specialist and my Low FODMAP diet…it is just nice to think there could be an option that might work for me!

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A Teary, Bleary Day

After a night of fitful dreams

Deep in color and emotion

The body now even more fatigued…

The sky expresses my turmoil

A glimpse of blue

Thick black clouds

Roll slowly, heavily overhead…

Their load released as

Fresh white snow on the mountain

Some falling as rain

Before the transformation…

The wind will gust

Then sudden silence

No movement no sound

Except for the lonely call of a dove…

Vibrant colors surround

Spring brings life

Yet with it sadness

The reminder of loss…

That hollow ache

The yearning to reach out

To touch….to hear…

Memory brings images

Laughter and sunshine

Shared experiences

The deep connection

That even death cannot break…

Slowly go about a few tasks

Listening to the sounds

Of Meatloaf on the stereo

Shifting focus as I struggle

The tears come and go

Just as the rain…

Today the elements

And I are united…

In a teary….bleary…day….

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Start of Week Two

It is now going into the second week after my Ketamine Infusion. I would have to say that the extreme edge is still absent….I am dealing with itching, burning, deep body aches, extreme fatigue, extreme Fibro Fog, muscle weakness…that affect my entire body.  The numbness is still on the right side of my face and neck…..

In reading this…you may be thinking….”What relief?”  I will say the intensity of the headache is much less….also the stabbing and throbbing is absent…

Just a few symptoms absent….make a HUGE difference!

I am doing my best to keep up with my daily stretching….enjoying the wonderful sunshine while relaxing in the hammock…

So ready to be able to manage just a short walk!  The constant refocus of what can be done is such a challenge!  Like the few entries I needed to make on the computer for my Husband’s business….something that should have taken no more than five minutes took me one full hour!  At least I was able to complete the task!  LOL

Those not dealing with our hidden illnesses/conditions cannot begin to comprehend the frustration…the intense patience we must have…the struggle with depression….the constant need to help distract….while realizing that this IS and WILL BE our reality!

Our only hope is that we will eventually reach a point that we can balance some form of a “normal” life….even though it will be very different from our life before…

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Pain Psychologist???

Today was the day!  My husband and I headed to the Neurological Department at the University of Utah with the hope that there might be something that they could offer….some slight glimmer of hope…that would help with my disabling, pain and other symptoms of Fibromyalgia/Polyarthralgia/Chronic Pain Disorder.

After about three hours of reviewing medical history, symptoms and enduring the painful exam……I hear those dreaded words….”Due to your unique situation (the extremely sensitive intestinal issues I have) there is nothing we can do”…..”We wish we could give you a better idea of why you are feeling like you are….but your conditions are not understood”….”The pain and the symptoms you are experiencing are not related to nerve damage or muscle damage”…..”The loss of memory is not neurological”.

So yes….what I know….I AM NOT CRAZY….was confirmed!  LOL

The only suggestion that was given was to see a “Pain Psychologist”.  I am now researching….I have also asked on a couple of Fibro Forums if anyone dealing with Fibro has had success with this type of treatment…..

If you are reading this….and you have seen a Pain Psychologist….I would really appreciate your input as to if you feel it helped or not!

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Shaken

My confidence has been shaken or rather shattered!

Having Fibromyalgia makes me unsteady on my feet as anyone with this conditions knows! I have taken many falls and close calls.

Yet I have felt relatively safe in my own home!  The walls, counters and furniture have been my friends….supports to assist me as I traverse from sofa to restroom and back….or to shift to my recliner….or to get a cup of water….

This afternoon took that “safe” feeling away from me!

I started around corner of cabinet to head towards sink when my world went completely topsy turvy! I heard the sound…that loud thump….before I realized what had happened….I then felt it as I heard our dog quickly come to my rescue!

My lower back and butt took the brunt…however, my shoulders and head were a close second!

I could feel myself starting to shake…..fear overwhelmed me….it was all I could do to retreat to my recliner….

Hours later….I am still shaken!  It was yet another slap in the face…..another strong reminder of this condition!

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Thoughts of Pain

It wraps itself around

Our innermost being

It swells and

Sends tendrils to

The most distant parts

Leaving no nerve unmolested.

It has so many faces

Making its capture

Much more convoluted

Morphing, shifting, ever changing.

Its manifestations are many

Taunting each of us

In unique ways

Similar faces many of us see

Yet some are spared

The vast multitude of masks.

Others it would seem

Those like me

Are being shown

More faces than could have been imagined!

The reason for Pain’s

Many faces…..masks

Science does not yet understand.

Definitely not found

Alone in the mind

Pain is a true

Physical opponent

Fighting for control.

We each battle

We wage our own

Individual war

Yet we share

The common opponent!

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A Son’s Disbelief

Our 11-year-old son gives me hugs which I love of course! However, last night while sitting in the office with him as he was doing his homework he said something that completely took me aback.

Since I cannot sit very long, I usually spend some time lying on my back on the floor….or fidget around….shifting my arms and legs. I must have made a slight sound as my son turned to me and asked if I was okay. I said I was fine. He promptly responded, “No you are not!”

I reassured him that even though I was not feeling very good, that there would come a day that my pain level would be better….that I would have better days. To this? His response was “Will that REALLY happen, Mom?”

I again told him that it would. That it might be one, two or more years down the road…but that day would come.

He still did not seem to completely believe but was satisfied with my answer. After another huge hug, he returned to his homework.

This is the “kick in the gut” that I as a parent with a combination of chronic conditions must “deal” with. I know that I am not alone. Each of us had had this moment with our kid(s)!

It is the added responsibility…the extra push that forces us to feign a smile…no matter how we are feeling! Even when our kid(s) can see through the charade!

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No Escape

There is no escape from the pain this morning….no position that offers any type of relief…the stabbing pains coursing through the legs….hands and fingers aching so much in each joint making it almost impossible to type this.

I just have to try to express the feelings of today….crying is of no use…no help to anyone…I have no true answers for today….I can only think this still my body reacting to having taken a road trip and being away from home for the Holiday.

Plus the stress of going through the first Holiday season without my Baby Sis…I am sure there is a part of my brain that is focused on that aching part of my heart…it is just the pain that is drowning out all sense…all thought.

I can barely follow a thought….cannot remember from one room to the next. The headache has all ready stated.  The Fibro Fog is thick this morning….a welcome veil…as it helps to numb my senses….

It is so hard to “walk” to the restroom….my legs are heavy…yet it is like they are not connected….my brain says to move…yet…I can barely manage a shuffle….

My arms are throbbing and burning…making my hands shake….making it even more difficult to express myself….

Yet…I am driven to write…to get this “off my chest”….to say these low days….even though they seem to drag us down further than we could even imagine…are going to end…..

One morning I will awake to find that my joints are not throbbing….not stabbing….not aching…..that I will finally be free of at least this one symptom!

That is my focus….as I force gentle movement and stretches….shifting under my heated blanket…distracting my overwhelmed senses as best I can…

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Struggling with a Hidden Illness

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I sit here searching for the words to describe what it is like living with a “hidden illness”.  For those with Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/etc., you know how frustrating it is to look healthy on the outside….when your insides are screaming, your muscles are revolting, your body spasms, the throbbing intense pains, the knives being pierced randomly throughout your limbs….

This picture from this morning brought inspiration!  No one questions that the moon exists….we see it even out of place….as this morning…its bright reflection in the early morning light….

The moon is usually “hidden” during the day….yet we do not give it a second thought!  We know that it is there….that we expect to see some phase during the nighttime hours.  We delight in the brilliant brightness of a full moon!  We oooh and aaaah when we are allowed to view a lunar eclipse!

Our “hidden” illness/conditions are just like that moon that is normally unseen during the day.  No thought is given to the normal day to day….except on those mornings when it is “out of place”….in the morning sky.

I do not look like someone that is “out of place”…..just as most of us with these conditions…..yet….if you paused for a moment you would might notice:

My husband or son pushing me in a wheelchair;

My awkward leg movements as I lean heavily on the arm gently guiding me to a chair;

The strange flexing and twisting of the wrists and fingers (as if this will relieve the pain);

The fact that I continue to move or shift my feet, legs, head….with only short pauses;

The distant look in my eyes (if you look quick enough!) as I allow my mind to take a momentary break from the pain that is wracking my body;

My slurred speech…..mispronounced words…..incorrect words that bring laughter to our son;

Fidgeting while either attempting to stand or while sitting;

Fumbling awkwardly to try to get my wallet out of my purse…..followed by the enormous amount of time it takes to get payment out of my purse to the cashier.

All of these are outward signs…..these are the “glimpses” into my….into our world!

My body may be on fire….the stabbing pains intensely attacking my arms and legs….ice picks being run through my hands and fingers…..the spasms in my back and legs…..the shards of glass slicing into my feet…..the bugs crawling under my skin…..the choking and sickening pain of the weight of my clothes……

You will not see these things….instead you will see me smile….you will see me interacting with my husband and son….

I do not allow the overwhelming struggle that is within to rear its head when in public…..I allow the heavy sighs and the closed eyes only when alone….

For all the effort and energy to just make it through the day….is more than words can describe…..it is like holding an enormous weight overhead….not being allowed to take a break or rest…..

Yet…even in rest there is no peace….the symptoms continue….day and night…..it is just at night….our dreams can sometimes take us away for a short time!

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