A great WordPress.com site

The Glistening Ray

Looking out the window

I watch the leaves dance

In the gentle breeze…

Moving to and fro

The shades of color shift

From dark to light and back again…

The sun’s rays make the leaves glow

Reflecting the rays like colored mirrors

The radiance adding depth to the color…

The rays permeate the trees

Cascading through the leaves

To dissipate into the depths…

My eyes are drawn back

To those top most leaves

Dancing with the rays of the sun…

I recently relayed a story to a friend of mine. Immediately following she asked if I had written about it on my blog yet…

A couple of weeks ago I received a phone call from my parents which was earlier than they would normally call.  Of course, I was concerned that something was wrong so instead of answering the phone, “Hi There”….it was more like, “What’s wrong Mom?”.  She quickly reassured me that nothing was wrong.  She said that Dad had something he had to tell me.

With a huge sigh of relief, I waited for my Dad to come on the line.  (Dad, if you are reading this…forgive me for my summarization!)

“Good Morning, Stace! I was reminded of something that was too long to text you about.  It was when we were living in Gladstone; and, you were a toddler.  Every day that I would come home from work, I would poke my head over the fence and hear you squealing…then you would come running, smiling and squealing to me.  That was the best part of my day!”

What a great way to start the day….and what a great memory to hear my Dad share.

As I have referenced in a prior blog, I recently really overdid it.  It was an innocent mistake that many of us with chronic conditions/illnesses have probably made.  In setting up appointments, I scheduled two appointments on the same day thinking that a combined trip would save energy and time.  I knew it would be more tiring than just one appointment, but it couldn’t be that bad…right???  Well…WRONG!!!!

My first appointment was with the psychologist…an hour long session.  Much needed, as we are working through the frustration and isolation that my conditions cause.  We have been working on some great new tools to add to my arsenal.  I have come to really appreciate this addition to my medical team.

After that, it was time to head to the appointment with my pain specialist.  We had a bit of a wait, which was good as I could tell I was getting a bit tired and needed to gather my second wind.  Once we reviewed the past couple of weeks, the adjustment of my pain pump was complete, and we were headed out of the office to fill a prescription.

While waiting for the prescription, we did a small amount of shopping which included picking up an easy fix for dinner…meat skewers for the grill.  After a short wait it was finally time to head home.

Once home, I could feel my body saying enough…so I did go to bed early so that I could get off my feet.  The next morning was hard to wake up…and yes, I did sleep in.  However, even though my eyes were open, I was still asleep.  It is that deep, heavy fatigue that envelopes the entire body.  I could do nothing but recline in my chair or lie on the couch.

I did muster enough energy to attend a friend’s BBQ for a couple of hours.  I just could not bring myself to disappoint our son…who was looking forward to seeing several of his friends.

The next day of course, was another day of heavy fatigue…just not quite as thick as the day before…but close! My brain was blurry; and, I completely lacked focus.  I was again resting in my recliner, lying on the couch…and went to bed very early as my body was just done.

Finally, awaking on the third day, I am feeling more of “my” normal.  That is if you can use the word “normal” in any type of description of those of us with chronic illnesses/conditions! My energy reserves are still extremely low so today will be a day of rest…reclining in the chair and will include a nap in the early afternoon.  By tomorrow, I might be able to take a shower!

It is hard to describe in words the fatigue that comes with a chronic condition/illness like mine.  A healthy individual will automatically think, “Oh yeah…I know exactly what you mean…like when I have had to work an 18 hour shift.”  Well…you must magnify this by at least 10!  (Yes…probably being quite conservative.)

The “fatigue” that hits us when we overdo…even slightly…completely strips us of the ability to function…it is, as I described, like a thick blanket that tightly wraps around us…all senses are numbed…we see…but we don’t see…we hear…but we don’t hear.  We are unable to form a sentence…it takes all of our effort to just sit in a chair…all that we can truly do is lie in bed and hope that sleep will come…as we melt into the mattress.

No matter how carefully we try…fatigue will hit.  When it does, all we can do is give in and allow our bodies the chance to recuperate and to recharge…read if you can…watch a silly movie. Smile and relax…know that it will pass.

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.

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…)

Awake?!?!

The beauty of the sky

The myriad of colors

The sounds of life abound

Even with the ever ringing in the ears…

It is as if I had been in a lifetime slumber

My senses forever dulled

Reaching upwards for help

While overwhelmed in quicksand…

Illness strips us of the familiar

We are thrust into the unknown

Each step taken as with a blindfold

Hands outstretched groping in darkness…

Our medical teams struggle

Conditions and illnesses so misunderstood

Further muddled by myriad of symptoms

Each of us so different from the other…

We search for answers

Yet try as we might

We find health elusive

Stripped from us and locked away

Secreted in the darkest, farthest corner…

We are tried and tested in ways indescribable

As words are a shallow testament

To the inner symptoms that abound

Forever changing and challenging…

 

Mindfulness

My Clinical Psychologist introduced me to a powerful tool to add to my arsenal. It is called “mindfulness”:

“A mental state achieved by focusing one’s awareness on the present moment, while calmly acknowledging and accepting one’s feelings, thoughts, and bodily sensations, used as a therapeutic technique.”

She walked me through a breathing exercise…complete focus on the breath itself…feeling the cooled air entering my nose…feeling it hit the back of the throat…feeling the rise in my chest as the air enters the lungs…feeling a second, subtle rise of the chest before exhaling…feeling the warmth of the air as it leaves the body.

I was then read a short story about washing dishes, from “The Miracle of Mindfulness”….I will share just one paragraph that sums up the idea of mindfulness very well…

“…If while washing dishes, we think only of the cup of tea that awaits us, thus hurrying to get the dishes out of the way as if they were a nuisance, then we are not ‘washing the dishes to wash the dishes.’ What’s more, we are not alive during the time we are washing the dishes. In fact we are completely incapable of realizing the miracle of life while standing at the sink. If we can’t wash the dishes, the chances are we won’t be able to drink our tea either. While drinking the cup of tea, we will only be thinking of other things, barely aware of the cup in our hands. Thus we are sucked away into the future — and we are incapable of actually living one minute of life.”

I applied this during my walk outside this morning. I took the time to not just see the sun…but to, really, “see” it! I felt its warmth…the rays touching my skin…the brightness shining…the reflection on the leaves. I felt the slight breeze…ever so gently twisting and turning the leaves in the trees…the slight movement of my shirt being pressed against my skin…the movement of the hairs on my arms…

It was truly amazing!! My focus was dramatically shifted…momentarily transported into the present time…fully embracing and experiencing what was happening around and to me.

IMG_7609

Tag Cloud