Embracing life with chronic pain and illnesses.

Posts tagged ‘pain pump’

Living with Chronic Pain Conditions

Words cannot explain the feeling of pain throughout the body…day and night. No positions help relieve.

Hard to express the feelings of dealing with this every day…minute…hour…month…year. It is all consuming!

I praise God for strength that is given to make it through the day. I focus on my family…wonderful Hubby, son and step son!

It is so unreal! Why so much pain and suffering? Yet you Our Lord went through so much more!

I praise God for each day and enjoy every moment with everyone!

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My “New” Self

Battling chronic pain conditions like Fibromyalgia, Polyarthralgia, IBS, Pelvic Floor Syndrome, Sciatica, recurring Shingles, Sacroiliac Joint Disfunction, arthritis throughout the lumbar spine area, permanent Colostomy…the list goes on…is VERY difficult.

It tests every ounce of courage, forces us to dig deeper into ourselves. Faith, family and friends are our positive partners. However we can find ourselves alone, divorced and raising our child/children on disability income.

There are times to cry and we must give ourselves permission for that. The emotional, physical and mental control can really take its toll.

We must be patient with ourselves and our new reality. The acceptance of changed bodies due to surgery or surgeries and getting older. When I first had my Colostomy there was no mention of using support belts to prevent hernia, so it was very discouraging to go through a peristomal hernia and its necessary repair. And now the need to layer up with specialized support belt or active support garments is just “a part of life”….essential to my well being.

Let’s face it ladies, we are not sure how to take that big 50! We’ve seen images of older women with their boobs to their bellies. I saw this happen to myself at 51!! It was like they had lowered themselves at least two inches! Ahh!!! Scary!! So I treated myself to some active wear sports bras. Feel better and parts stay where they should without that nasty pulling of a regular bra.

It takes time to adjust to our new living conditions…a new house, change of routine, reviewing and re-examining our budgets. There is time to do this…when our minds are alert and focused.

Thankful for the medical team who have continued to try new out of the box thoughts on my behalf. These have made life easier. Yet reinforce, I am no longer that same person. I have adapted, grown in Faith, now better understand my body and its cycles, know when to ask for help, and embrace every minute of every day.

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Nightly Prayer

I can feel your presence

After praying or struggling with thoughts

That peace that surrounds like a warm blanket

Calming and allowing for some sleep.

Images will come to mind

Flashes from moments in the past

Pictures from life on canvas

Reassurance of the path now treading.

Realizing that this experience will help others

Praying for the lives that will be touched

A quiet peace prevails during turmoil

I just instinctively hold tight to my rock.

We have our thoughts about our path

The direction we intend our lives to go.

Yet God often has something else in mind

So embrace His direction and be thankful.

© Stacey deSoto — 2019

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Silence

As the snow deepens

The silence grows

As if time is standing still…

My mind is refreshed

As this quiet seeps to my core

Banishing all doubts and fears…

The clanging in my body

Fights the stillness found within

I close my eyes to return to the calm…

The falling snow builds

My mind again quiets

The screaming in my body subsides…

Such a blessing is granted

To reaffirm Faith that is tested

My soul is stirred…

© Stacey deSoto — 2018

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The Example of Job

A summary of the story of Job from SparkNotes: Bible: The Old Testament: Job reads as follows:

“He is “blameless” and “upright,” always careful to avoid doing evil (Job 1:1). One day, Satan (“the Adversary”) appears before God in heaven. God boasts to Satan about Job’s goodness, but Satan argues that Job is only good because God has blessed him abundantly. Satan challenges God that, if given permission to punish the man, Job will turn and curse God. God allows Satan to torment Job to test this bold claim, but he forbids Satan to take Job’s life in the process.”

sparknotes.com/…ldtestament/character/god

I am sure this summary brings back memories of Sunday School, sermons, church camp and/or youth group. It may raise questions in your mind that were or were not answered. It may still have that element of surrealism, confusion or doubt that was initially in our mind. After all, this is a story of a man…a normal man just like you and me…being held up as a challenge to God by Satan.

Having been primarily homebound for just over two years due to my chronic health conditions, I have had a lot of time to pray, to surf the web, to read (when Fibro Fog is not  too thick), to watch TV… Distraction has been a powerful tool to assist with my daily struggles.

I have found that my perspective of God, Satan, and Job have changed during the many years of chronic pain and the plethora of symptoms that come with Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, Neuralgia, and the like. This change of perspective  has come about because of the deepening of my Faith, of the miraculous events I have witnessed, and just the overall increase in knowledge that the journey of life has provided.

My thoughts of Job have changed from wondering how a good God allows evil and human suffering to exist or why God is so concerned with humanity while appearing to focus on our faults and punishing us to focusing more on the relationships that are in play.

Reading the story of Job with this adjustment to my mindset finds me awed by the friendship that Job had with God. Think of it! God was confident in the relationship that He had with Job!  Job was faithful in worshipping God, he prayed to God, he spoke to God — sharing his thoughts, fears, frustrations, joys, and disappointments.

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Update — Coming Off Cymbalta

Coming off Cymbalta even with doctor supervision and support has been a HUGE challenge!! Yet, it is nothing compared to the cold turkey symptoms, albeit there has been some overlap.

During the first two weeks with the reduced dosage, I have experienced electric shocks, intense brain fog, burning that is overwhelming, skin beyond overly sensitive–lightweight blouse causing stabbing sensations that reach to my core, and nausea…to name a few.  I have also had increased ringing in my ears making sleep a challenge!

I am now to the next step…which is one of the lower dose capsules every other day for two weeks. Should be interesting! LOL  Since there is so much going on in my body, I have continued to take the two short acting opioids.  It will definitely be an interesting conversation with the pain specialist this next Thursday!  My guess is we will up the dosage of the pump and then stay at that level for 3-4 weeks as we see how my body settles.

It is very exciting to think that I will be Cymbalta free by Labor Day weekend!

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Now for the Difficult Step!

If you have been reading my blogs lately, I have been writing about my pain pump and the journey to get off oral medications.  (NOTE: I know that I will have some form of oral medication when all is said and done for flares not controlled by the pump.) I am making great success with my oral pain meds….am only using the short acting form during the day.

This past Friday, I started what will be the most difficult step…the process of getting off ofimages Cymbalta! I say this because of my “cold turkey” experience with this powerful medication; and, I know that, even with my doctors involved with this, I will most likely deal with some of those nasty symptoms.

My doctor reduced my dose from 60 mg to 30 mg.  I will be taking one pill per day for two weeks, then I will take one pill every other day for another two weeks.  After that, I will be Cymbalta free.  (At least, that is the plan!!!)

Today my body is a mess (legs stabbing/throbbing, upper right side is on burning, IBS-D is flaring –cramping and knots, extreme Fibro Fog, etc.) as it starts adjusting to a lower dose. Also doing my best to time my short acting pain med to offset the increased pain.

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Week 11 with Pain Pump

Yesterday I went in for follow up with Pain Specialist.  He did another increase since I am struggling by 5:00 pm…it takes all my energy to not take an extended release Nucynta.  I really think we are getting close to having the usual, day-to-day pain dulled by the pain pump!  A huge change for sure!

By no means does this mean that my Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, Neuralgia, etc. are cured.  The pain pump is doing its job…it is now helping with the pain!  Yeah!!

I am still dealing with the other “joys” that come along with my hidden conditions.  The best example being the fact that my legs have not been working for the past three days.  My legs are heavy, like I have sunk into that gooey mud up to my knees…all my effort is required to stand and shuffle (worse than Zombie walk) to the restroom and back.  For those of you with one or a combination of these hidden conditions/illnesses, you will understand!

I am so encouraged though!  We have made improvement to one of the toughest aspects of Fibromialgia/Chronic Pain Disorder/etc.; and, that is taking the edge off the horrific, 24/7, 365 day pain!

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7 Weeks Post Op – Pain Pump

First of all, I want to remind everyone with one or a combination of our conditions, whether you are dealing with Fibromyalgia, Chronic Pain Disorder, Chronic Fatigue Syndrome, Neuralgia, etc. do NOT book more than one doctor appointment in a day…especially if one is with a Psychologist!

Our bodies before our illnesses/conditions is NOT the same.  We are now living after a diagnosis or combination of diagnoses.  My new rule of thumb…if I find myself thinking, “in the past” or “I used to” and then _______ (fill in the blank)….I will take that as a red flag and stop.  I am NOW in my NEW reality.  In this reality, there was no “in the past” or “I used to”.  I will also use this red flag to alert me that I must do something different…or something that might not make sense to someone else…like…NO multiple appointments unless it is absolutely necessary.  IF multiple appointments are required, someone else will drive; and, I will be in my wheel chair the entire time.

As you guessed by now, I had to drive.  Thankfully, my son was with me or this combination of appointments could have never happened!  He had to wheel me in my wheel chair after all! LOL

I digress…forgive me!

At 7 weeks now with the pain pump, I went to the pain specialist for another adjustment.  My extended release opioid had been cut in half…and with this adjustment our goal is to completely remove the extended release opioid.  I still have a fast acting 75 mg opioid that I am allowed to use twice a day if needed.

My incision areas are both healing very nicely!  I no longer have to use the brace and am allowed to move my upper body…limited bending.  Still not twisting or stretching…that will come soon!

My pain specialist and I are very excited at this point as we are now entering unchartered territory!!  For me…I have never been able to have the “edge” of the pain so well controlled.

Here I need to interject an important note.  Pain is just one piece of our complex health situation.  The extreme fatigue, electric shocks, brain fog, numbness, tingling, etc. are STILL present…will ALWAYS be present in some form or combination.

I am learning that I must now set strict time limits…plan my activities more carefully…provide myself more rest time.  My symptoms have been “artificially” changed.  I am SO thankful for this change….I am SO thankful for my pain specialist…for my pain pump….for this NEW leg of my journey.

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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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