Embracing life with chronic pain and illnesses.

Posts tagged ‘IBS-D’

Laser Focus

Beware of the steady focus on pain alone

For pain is not the only symptom we battle

Yet pain’s voice can be the loudest

Blaring over all others…

Or worse yet, swallowing them into itself

The headache, the abdominal cramps, the stabbing in the feet

Forced to feed into the great voice called Pain…

Those with softer voices yet carrying horrifying weapons of their own

Like bloating, muscle spasms, brain fog, blurry vision, burning sensations

Are carried away on pain’s current, and its need to be in the forefront…

We must remember each one of our conditions

For each one carries its own set of symptoms

Oftentimes overlapping thus covering up the condition responsible…

This masking and blurring, often made worse by our medications

Further weakens the voices the need to be heard and understood

To better assist us in dealing with what condition is truly at the front…

While remembering that each day, each moment

We have no control…none whatsoever…except how we deal with the voices

Attempting to listen harder so that we might better strike at the source…

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Conversation with Self on Fibro Brain

“Deodorant in second drawer…”

Absently looking into the mirror…

“Mmm…”

I slowly turn to leave the bathroom.

“Deodorant in second drawer…”

“Oh yes! I must brush my teeth!”

I turn back around

The early morning light

Cascading through the window.

I shuffle out the door…

“Oh yes! Must brush my teeth!”

I find myself in the bathroom again

My eyes happen upon the toothbrush

Hanging quietly, waiting…

“Oh man!”

Chills hit my body

Drawn to my reflection, again,

I forgot to put on my sweater!

I carefully navigate to the closet.

A glance around the bedroom

I smile as I move toward the bed

Reaching down to collect my soft fleece.

My mind is screaming,

“What did I need to do?”

A long, heavy sigh

I carefully put on the fleece

And begin my slow methodic walk

To my comfy recliner.

I stop part way down the hall,

Slowly shake my head

Another heavy sigh

As I continue to my recliner.

My body falls into the chair,

Feet up with body stabbing and throbbing

I pull the blanket over me;

Waiting for the worst of the pain

To ease enough to rest my aching body.

I find myself as if frozen in time,

“Oh man!! I forgot to put on deodorant!”

Symptoms — Just Try to Explain

As I attempt to write my thoughts, I am overwhelmed with the myriad of symptoms my mind and body are experiencing! The shooting pain in my legs*, the burning and stabbing in my thighs*, the burning and stabbing in my back*, the ice picks stabbing my feet, the stabbing and searing in my arms/wrists/hands/fingers, the burning and deep aching in my right arm, the burning and pressure in my hips*, heavy brain fog (or Fibro Fog) are the primary symptoms that come to mind…to distract and scatter my thoughts further from each other. (*Exaggerated on the right side.)

For those of us with chronic illnesses/conditions, our brains can stall out while we trying to express what our body is going through when asked this “routine” question by our doctor.  (Using doctor visit as example because that is the one place that we do our best to be as completely honest and open as possible! If you are like me, you do your best to hide the truth from those around you.)

The answer to this “routine” question is further complicated by the combination of our illnesses/conditions and the medication(s) we are taking. I looked up the most common (10 or fewer) symptoms of the following for quick reference:

Fibromyalgia: Pain, Sensitivity to Touch, Environmental Sensitivity, Muscle and Joint Stiffness, Muscle Spasms, Exhaustion, Trouble Concentrating (Fibro Fog), Chronic Headaches, Bowel Troubles, Depression (http://www.fibrotoday.com/10-common-symptoms-fibromyalgia10/)

Polyarthralgia: Pain, Joint Tenderness, Stiffness, Redness, Fatigue, Tingling or Unusual Sensations, Burning Sensation at Joints (http://www.healthline.com/health/polyarthralgia#overview1)

Neuralgia: Severe Pain, Burning, Stabbing — usually due to an irritated or damaged nerve, so it is localized (http://www.healthline.com/health/neuralgia#overview1)

IBS (Irritable Bowel Syndrome): Abdominal Pain and Cramping, Diarrhea, Constipation, Alternating Diarrhea and Constipation, Changes in Bowel Movement, Gas and Bloating, Food Intolerance, Fatigue and Difficulty Sleeping, Anxiety and Depression (http://www.healthline.com/nutrition/9-signs-and-symptoms-of-ibs)

I then looked up the 10 most common side effects of medications that I have used. (My experience is limited due to the extreme hypersensitivity of my system.)

Cymbalta: Nausea, Dry Mouth, Constipation, Fatigue, Tired Feeling, Drowsiness, Difficulty Sleeping, Loss of Appetite, Dizziness (http://www.healthline.com/nutrition/9-signs-and-symptoms-of-ibs)

Nucynta: Nausea, Constipation, Fatigue, Dizziness, Drowsiness, Itching, Runny or Stuffy Nose, Increased Sweating, Dry Mouth, Sleepiness (http://www.rxlist.com/nucynta-side-effects-drug-center.htm)

These abbreviated lists demonstrate our conundrum. Our illness/conditions have a huge laundry list of potential symptoms a number of which overlap, each of us is unique in how they manifest –from minor inconvenience to full-fledged disability. Making it all the more confusing for all those we interact with.

Our conditions are complex (we have multiple illnesses/conditions)…the medications prescribed for us add another level of complexity as the side effects can further exacerbate our conditions while providing some level of relief. So please do not take my long pause prior to answering out of context, I must temporarily “check out” to conduct an inventory list….that will be promptly jumbled by my “Fibro Fog”…and result in a bleak attempt to put into words the way I feel.

The Fallacy of the Pain Scale

I am sure you recognize this graphic. We see this image in one of its various formats eachPain scale chart vertical time we visit the doctor.  For those of us “blessed” with chronic pain, it is a mute point.

I was ridiculed by the ALJ during my hearing yesterday because I have consistently been using the number 10 to describe my pain WITH medications.

Now let me attempt to describe this Pain Scale through the eyes of someone who is homebound and in constant pain.

Many years ago, a wise nurse tried to help me interpret my pain to be placed on this scale.  She simply said that in my situation, if I am noticing pain/discomfort that I am to respond with a 6.  If my day-to-day life is completely off kilter, I should respond with a 10.

Fast forward to the present. The ALJ’s understanding is that a “10” means you must be in the hospital.  I can hear the smirking of those with chronic pain. Our medical team is all ready doing everything possible to try to improve our quality of life…oftentimes, that means to bring pain within a tolerable range…like a 7-8! Reality check!  All they could do is attempt to overwhelm my system with medications that I cannot tolerate!  My combination of diagnoses do not have a definitive origin which has caused much frustration to my doctors and specialists.

I could hear the condescending tone when the ALJ responded to my description of Polyarthralgia.  He asked about Lupus, Rheumatoid Arthritis, etc.  All have been ruled out.  My set of diagnoses: Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, Somatic Symptom Disorder, Pelvic Floor Syndrome, Neuralgia, Postherpetic Neuralgia, Paresthesia, PTSD, IBS-D, Colostomy; do not fit the norm.  My issues have been “unique” making my “special” (terms that I have heard so many times).  These are diagnoses that you are assigned when you do not test positive for something!

Why have I been answering “10” “Unimaginable/Unspeakable?  Let’s see…just a few thoughts come to mind…I am homebound, can barely move from the bed to my recliner, find no position to help relieve symptoms, have thick Fibro Fog (brain fog), have difficulty completing a sentence, experience Flares on a regular basis (riding in car to doctor appointment will set me back for days), cannot concentrate…these diagnoses have completely robbed me of a “normal” life.  How do you describe to an outsider the reality of being a prisoner within your own body that is complete with its own torture chamber?

The other important point, is that I am in the process of weaning off of the medications as we continue to fine tune my pain pump.  Here again, the ALJ just wanted to focus on the ONE visit where my pain level was actually down to a 9! The reality of that number was the result of the pain pump being implanted and still taking ALL medication!  The entire reason we fought SO hard for the pain pump was to offer me the hope of true improvement…NOT masking it by overwhelming my system with drugs!

The Fallacy of the Pain Scale

I am sure you recognize this graphic. We see this image in one of its various formats eachPain scale chart vertical time we visit the doctor.  For those of us “blessed” with chronic pain, it is a mute point.

I was ridiculed by the ALJ during my hearing yesterday because I have consistently been using the number 10 to describe my pain WITH medications.

Now let me attempt to describe this Pain Scale through the eyes of someone who is homebound and in constant pain.

Many years ago, a wise nurse tried to help me interpret my pain to be placed on this scale.  She simply said that in my situation, if I am noticing pain/discomfort that I am to respond with a 6.  If my day-to-day life is completely off kilter, I should respond with a 10.

Fast forward to the present. The ALJ’s understanding is that a “10” means you must be in the hospital.  I can hear the smirking of those with chronic pain. Our medical team is all ready doing everything possible to try to improve our quality of life…oftentimes, that means to bring pain within a tolerable range…like a 7-8! Reality check!  All they could do is attempt to overwhelm my system with medications that I cannot tolerate!  My combination of diagnoses do not have a definitive origin which has caused much frustration to my doctors and specialists.

I could hear the condescending tone when the ALJ responded to my description of Polyarthralgia.  He asked about Lupus, Rheumatoid Arthritis, etc.  All have been ruled out.  My set of diagnoses: Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, Somatic Symptom Disorder, Pelvic Floor Syndrome, Neuralgia, Postherpetic Neuralgia, Paresthesia, PTSD, IBS-D, Colostomy; do not fit the norm.  My issues have been “unique” making my “special” (terms that I have heard so many times).  These are diagnoses that you are assigned when you do not test positive for something!

Why have I been answering “10” “Unimaginable/Unspeakable?  Let’s see…just a few thoughts come to mind…I am homebound, can barely move from the bed to my recliner, find no position to help relieve symptoms, have thick Fibro Fog (brain fog), have difficulty completing a sentence, experience Flares on a regular basis (riding in car to doctor appointment will set me back for days), cannot concentrate…these diagnoses have completely robbed me of a “normal” life.  How do you describe to an outsider the reality of being a prisoner within your own body that is complete with its own torture chamber?

The other important point, is that I am in the process of weaning off of the medications as we continue to fine tune my pain pump.  Here again, the ALJ just wanted to focus on the ONE visit where my pain level was actually down to a 9! The reality of that number was the result of the pain pump being implanted and still taking ALL medication!  The entire reason we fought SO hard for the pain pump was to offer me the hope of true improvement…NOT masking it by overwhelming my system with drugs!

Blessings

I had the pleasure of having visitors yesterday.  Being primarily homebound, it truly brightens my day!  It provides contact when we are on the sidelines…it is a blessing to be taken out of the day-to-day normal.

During our conversation we talked about how school was going for our kids, they shared their struggles as families to adjust to the new schedules which now include sports activities, practice, homework.  Observing their dedication as wives and mothers, I was struck by a powerful thought…”Do they realize how blessed they are?”

I sat listening…mesmerized by thoughts of going to a HS Football game, driving kids to various activities, preparing family meals. It was like a movie playing out those words as images flew past…again the powerful thought…”Do they realize how blessed they are?”

My brain has been so very thick with brain fog or Fibro Fog that it is next to impossible to put words to my thoughts. It has been a huge challenge to speak…but I could not ignore the seed that had been planted.

I am compelled to share some of these blessings:

  • Having more than one child.  (Do not take this wrong…being a parent of an only child is a huge blessing also!)
  • Driving your children to activities. (It is truly amazing to be able to get into your car and go! No day before and day of resting and naps to have enough stamina…not to mention the required ability to focus.)
  • Preparing family meals. (This act takes SO much energy…only the simplest of meals is made in our household…and that is after hours of rest.)
  • Attending after school activities like a HS Football game. (This is a dream…to be able  to drive to the game…to walk to the bleachers…to sit and cheer.)

What can appear to us as routine, mundane or hectic is often a blessing in disguise. It can take losing one’s health to fully realize the every day blessings that surround us.

A New Day

The morning is bright and my body feels like it was run over by a Mack truck! The good news is so far no electric shocks or those nasty abdominal cramps! So thankful to not take that Cymbalta this morning!  Never again will that vile stuff enter my body!!

Today I will lay low and allow my body the time it needs to recover from yesterday. My tummy muscles are so sore and every fibre of my being aches, stabs, and throbs. Yet I would not trade how I feel today for yesterday!

This is truly a “new day” as I embark on this new path! What twists and turns will I discover?  Time will tell!  For now, I must rest…

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