Embracing life with chronic pain and illnesses.

Posts tagged ‘permanent colostomy’

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!”

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.

Change of Plans

This morning was a scheduled appointment with my pain specialist for another adjustment to my pain pump. I also had questions regarding getting off of Cymbalta.  Three weeks ago tomorrow I started the process of removing Cymbalta from my medication list…as you have seen on prior blogs, for the first two weeks I took the reduced dose daily…to be followed by two weeks of the reduced dose every other day.

Today was one of the days to take the reduced dosage.  Within 45 minutes, I was experiencing those darn electric shocks — roughly a jolt every 30 seconds; severe abdominal cramping; extreme brain fog (trying to write this is SO difficult); extreme nausea; right side of body is on fire, burning from head to toe; muscle spasms in legs, arms and hands; skin hurts to be touched –even by the lightest of shirts; intense irritability that I am having a hard time controlling; feet throbbing and stabbing…these are the most profound and outside of the “usual” intensity when experienced during my “normal” day.

I was able to let him know that this type of “flare” had taken place with each dosage during this every other day schedule…not to mention that many of these have present since lowering the dose 3 weeks ago (just less intense). Thankfully, my pain specialist said that I had been on the lower dosage long enough to stop taking it all together!

He told me that this is the most difficult part of the process.  Getting off of Cymbalta is extremely difficult for a lot of us!  He did say that my body should settle down within the next 3 – 5 days.

This process has been rough…to be honest, absolutely horrible! Yet it is helpful to have, as my Dad put it, “a light at the end of the tunnel”!

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.

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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