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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.

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3 1/2 Weeks Post Op

It is now 3 1/2 weeks post pain pump surgery! I have been amazed at how fast my body is healing. I have also been amazed at how quickly the swelling in my lower tummy went away. The butterfly bandages that the pain specialist placed over my surgical areas are still in place.  I have noticed just a slight loosening of a couple of them on my tummy.  No worries…supposed to let them fall off when they get loose.

I let my body dictate my actions. Let myself sleep in as long as I need….some mornings I am awake at 5…sometimes 6…I try to get up before 7.  I am making an effort to walk about the house a couple times a day…goal of 2-3 minutes…resting for an hour afterwards. A nap in the afternoon is still a must!  I find that I am sleeping for 2-3 hours…very solid and hard sleep.

I still have to give in and go to bed between 7:30 and 8 PM…to just lie down with pillow under my legs.  I take advantage of this quiet time to read or work a puzzle.  This down time has worked well to allow me to fall off into a good hard sleep.

We have definitely set what I think is the perfect balance of the pain pump and my current oral medication levels.  When I go back in (in about 1 1/2 weeks), my doctor will again increase the pain pump level so we can continue to cut back the oral meds.

This is such an exciting time! It is SO awesome to be working toward a goal…an achievable goal!  It is SO rare for those of us with chronic pain from Fibromyalgia or the like to actually be able to be in this situation!!

Now don’t get me wrong…I fully realize the path that is forming in front of me will be a long and arduous one.  I know it will be years to regain some muscle…as all muscle is gone for having been homebound for so long. Even with this realization, my excitement is not diminished!

Follow Up

This morning was my follow up appointment with my pain specialist for the pain pump surgery. I was very anxious for the appointment as he would be removing all the tape and bandages covering my tummy and back.

The short ride to town was hard…my lower back was hurting intensely and I could not have any pressure on it! So crazy…I had not felt that type of pain for a while…however, each of us knows how we can never predict where our pain will be!

We discussed the “improvement” in my pain…the absence of the sharp stabbing sensations…and spent time going over what steps we will be taking to achieve our ultimate goal.  First step is to reduce my long term opioid med by about 30 percent. He increased the output of my pain pump by about 20 percent. I will go back in to see him next Wednesday for another increase.

Our ultimate goal, is for the pain pump to handle my usual, every day pain…and having the short acting opioid for break through (flares) pain.

It is SO surreal right now! It has been so long in coming…something that my body is responding to that will help me get off the opioids and thus alleviate the side effects (the nasty constipation).

My specialist used a hand held device that had what could be likened to a hockey puck type attachment that I held against my clothing over the pain pump. The device receives information from my pump and also sends information to my pump.  Very cool! The initial adjustment was made before removing any of the tape and bandages.

We also had time to ask questions…so we talked about exactly where the catheter was placed into my spine and where the medication was being delivered to.  Basically, placed into my spine in the mid-back, and placed mid-shoulder blade for delivery…this maximizes body wide the medication without getting too much to my brain. (This placement was determined by my “normal” pain typically being 60 percent above the waist and 40 percent below the waist.)

I was assisted to sit on the exam table…and with many apologies, he started removing the tape and bandages. The first bandage to be removed was from the right side of my tummy where there pain pump is located. He was SO impressed with how well my body is healing! (This is a first for me…as I usually heal very slowly!) Absolutely no signs of any type of infection….very little bruising…very little swelling (and I mean little compared to how my tummy has swollen before after procedures)! He then removed the tape and bandage from my back. Again, he had the same comments! (My husband took a picture of my back so I could see…and I was amazed!)

The excitement in the room was palpable! My pain specialist and his nurse were smiling ear-to-ear! To have such a huge positive start on this new adventure, had us all super excited!

We will have several more visits before we get the pain pump fully dialed in…baby steps…although I should say “giant” baby steps! Each step is in the right direction…more reliance upon the pain pump and less reliance upon the oral opioids.

I am supposed to continue wearing the binder as additional support. If I am reclining, I can take it off. At this time, it is easiest to just wear it.

I was also told that I could take a shower!!!! It will be another 4 to 6 weeks before I will be allowed to take a bath or get into a swimming pool.

Wow! Something “Normal”?!?!

Today is day 11 after pain pump surgery. I am amazed at my body in regards to its reaction to this surgery…it is the FIRST time that my body is responding like a “normal” body would!

I am writing in consideration of my most recent surgery only…the fact that the incision areas are itching…that I can get in and out of bed…that I can sit in my recliner…all is progressing as it should!

I am sure a huge part of this is the fact that I have been super conscious to do EXACTLY as I had discussed pre-surgery with my pain specialist. I allowed my body to dictate each and every day…not putting any pressure on myself to meet any type of goal. By letting go of any preconceived ideas or outcomes, I removed a major stressor.

I have not focused on symptoms…not considered the amount of time spent sleeping…not concerned about what day it is…

In letting everything go, my incision sites have been allowed to heal as they should! I am excited for my upcoming follow up appointment.  I am ready for this new adventure to begin.

One Week Post Op

Hopefully I will not scare any of you!  LOL

I thought it appropriateIMG_7560 to post proof that sleep can happen!  Thus the wonderful “bed head” picture!

I have almost no memory of yesterday. It was one of those days that sleep overtook everything.

I did exactly what my body demanded and curled up in bed. I did not even think of combatting the heavy eyelids.

It was actually very freeing to just give in and allow my body to dictate its needs.

I am so thankful for a supportive husband and son that allow me to completely disconnect when my body demands it.

Per conversation with my doctor’s office, I am to continue taking it easy…moving about the house as I can…no bending, twisting, lifting, stretching. All is still looking good under the binder…swelling in lowest part of abdomen present…not nearly like before in other procedures.

At my follow up appointment, we will remove the tape and bandages…and at some point thereafter will be allowed to take a shower! I am thankful that our home is so well prepared for handicap…the bathroom counter is taller than normal….so it is easier to wet hair down.

It is important to make sure you have someone around! No matter how careful you are you will end up dropping something!  LOL  And…believe me…there is NO way to pick it up without asking for help.

At this point, I am better able to tell the difference from the surgical discomfort vs. the symptoms of my conditions.  The surgical discomfort is SO minimal!  Yet, it is just enough to be a constant reminder to be extra vigilant.

The Dark Side of Pain

The side of chronic pain that is difficult to talk about…to me it is also the hardest to admit! It is the darkness that is lurking at the corner of my mind…forever watching and waiting for the chance to pounce…to take over.

It wants to rob us of our relationships…our confidence…our strength…our fadark_street_195913ith…

This dark shadow that we sometimes view in the mirror looking back at us can have many names…depression, despair, failure, guilt.

It is that dark negativity that threatens to suck the very life out of us…to disrupt any hope of regaining a sense of normalcy…to destroy our relationships.

It happens to each of us…whether we want to admit it or not. It will attack over and over…always at a time that we are mentally weak.  Those times when we are in the midst of a flare…when we have not been sleeping…when brain fog is at its thickest…when are finances are stretched to the limit…when our closest relationships are tested, tried and hanging by a thread…

Inevitably it will overwhelm us…it will muddle our thinking…it will suck us down into the darkest depths…it will overtake who we are…

Do NOT allow these times to dictate who you are!  We are human…we are going to spend time in the dark…however, this is only temporary. It will NOT last! It does not mean that we have lost our faith…that we have given up the fight…that our closest relationships are forever broken…

It is at this time that we hit bottom…we cry out in the depths of our despair…begging God to help…to have mercy…to forgive us…to strengthen us…

We then rise to the surface from the depths of the darkness…to once again find our inner strength…to embrace those close relationships…to acknowledge and accept our new selves…

Update on Pain Pump

At my appointment last week with my Pain Specialist, I found out that all had been approved…ready for the next step…the actual pain pump surgery! So I have been anxiously awaiting for the scheduler to call me.

This evening I got the call!  I am to go in for some labs (no fasting required)…and am scheduled for next Wednesday!  The time and further details to come via the nurse who will follow up with me between now and Tuesday.

Since today was a busy day, I will rest tomorrow and go in for labs on Thursday morning.  That will give plenty of time for the labs to be reviewed and to make sure that there is absolutely no reason to delay the surgery.

I do know that this will be an outpatient procedure…should be 4-5 hours…then able to come home.

Will post more once I speak with the nurse…and of course will discuss my experience with the actual procedure and the process to dial in the medication!

For now?  I am just in awe…amazed at how fast all is now moving!!!!

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