Embracing life with chronic pain and illnesses.

Posts tagged ‘Colostomy’

Another Scan Completed

Halloween morning I was scheduled for a Gastric Emptying Scan to see if my stomach is also involved in my GI issues.  I can hear the question all ready…”why did it take so long”?

Like so many with chronic conditions/illnesses, we are dealing with a number of disorders/syndromes that have a lot of overlapping symptoms.  In my case, the precursor was fissure trouble from a very young age.  These fissures were just the beginning of a long, hard path of acquiring diagnosis after diagnosis.  Strewn with procedures, further testing and surgeries.

This latest step is a “gift” from my current pain pump.  My GI Specialist would not have ordered today’s scan without my being able to specifically describe my continued GI issues with him.  This ability to determine (or better word — guesstimate) what condition/illness is the forerunner led to my realization that there is something going on that has not been addressed!  These continued issues of bloating, stomach pain, abdominal cramps were subtly different.  It was almost camouflaging itself as an IBS flare…yet, again…there was a nagging difference.

Fast forward to this morning’s scan.  This test was quite different from others in the past. No clothing had to be removed…would have been able to keep my coat on if I felt more comfortable in it!  It started with eating some “radioactive” eggs.  By the second bite, my body remembered that taste…albeit in a different format — thick shake and also a more liquid variation.

I remember looking at the bowl, afraid that I would not be able to eat it all.  I asked the technician how much was necessary for the scan.  His response was a few more bites.  Yeah!!  I managed to get enough down to head into another room for the scan.

Lying flat on the table, arms close to my sides, I was slid into position.  A boxlike piece was then lowered (which required some self talk to calm my PTSD).  The images were gathered in minutes.  I didn’t have to hold my breath or alter it in any way!

This scan process was performed roughly every 50 minutes.  So in between scans, I was wheeled back out to the waiting room (thankful that I had my comfy wheelchair)!  It can take up to 4 scans…thankfully, I only required 3!

The hardest part of this scan was not being able to take the oral pain med.  Thankfully my pain pump was doing its job! Would have never made it through this without it.

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…

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.

Prayer Warriors

I understand that not everyone believes in God or in prayer; however, I am a strong believer.  There have just been things that I have experienced that could be explained no other way.

We often ask our friends and family to pray for us.  There is comfort in knowing that saint-jude-1606173_1280there are prayers being made on our behalf as we deal with crises, illnesses, chronic health conditions, sicknesses, surgeries, etc.  Yet we often sell ourselves short on all of the prayers sources available to us.

Being Catholic, there are so many Saints that are able to pray for us.  We do not pray to them; we ask them to pray for us…just like our friends and family.  Further we can always ask those dearly departed family and friends to pray for us as well.  Before you know it, there is a swell of prayers being raised to assist us in our time of need.

praying-hands-2535750_1280Of course, none of this takes place of our
personal prayers that are placed to our Heavenly Father through Jesus Christ.  There is a calming influence as we “unload” confess wrong doings, express our concerns, pains, sadness…as well as all that we are thankful for.

As we express ourselves, we are provided the opportunity to send up a “thank you” for all of those that have said prayers for us…and ask for Heavenly Father’s blessings for them also!

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.

Beauty and Tranquillity 

Breathtaking 

Hidden Beauty 

5 Weeks Post Op!

I met with my pain specialist yesterday for another adjustment to the pain pump.  At the last appointment, he had increased the pain pump dosage by 30 percent.  (To put an amount on that…it would be a total of 2 micrograms of medication being released by the pump throughout the day. VERY minute compared to oral meds when you are taking a 100 milligram tablet!)  Today, he turned the pump up another 25 percent which places me on the lower end of what is considered “normal” dosage for the medication, Prialt, that I am using.

It will take 2 – 3 days for my body to completely adjust to the lower oral meds. So next week I will have a very good idea of how my body is responding to the new level from the pain pump.

It is exciting to see how well my body is healing.  The butterfly bandages came off my back last week, and today they came off my abdomen.  There is a slight puckering in the skin…however, both suture areas look so clean!  I do not feel the pump…and I cannot see it!  Too me that is amazing!!

I only need to use the brace when out and about. So I have started sleeping without it!  WOW!!!  It is amazing how “human” that makes me feel!!  It is also nice to be about the house without it on.  I have also started using my spandex T-shirt style bra/undershirts.  They provide a gentle hug to the upper body overall…giving me that extra assurance!

I am still under restrictions…no twisting, bending, stretching, lifting.  I anticipate these restrictions being lifted and/or modified at my next appointment.

This new path is amazing!  I know that I am now at the foot of an untraveled route…I will be embarking into the realm of the unknown…and with hope of truly being able to have my pain “under control”.  (Keeping in mind, that there will always be that potential flare…)

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