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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!

A Visiter

First Adjustment (Pain Pump)

At my first follow up appointment on Thursday, it was very difficult to know how much (percentage wise) the pain pump was working vs the pain medication vs the complete rest. I could tell that there was a change in my symptoms…for example, the intense stabbing in my upper back was gone replaced by dull ache.

Our conditions are hard to articulate…the fact that our symptoms (read this as types of pain being experienced — stabbing, dull, throbbing, ice pick, aching) are not the same from day to day! Just as soon as you being to expect the intense stabbing in your feet, your feet will ache instead and the stabbing has moved to your chest…not to mention all the other pain sensations all over your body.

By Friday night it was clear that the slight reduction in oral medication and the slightly more than conservative increase of the medication from the pain pump was not enough!

I have an appointment set for this coming Thursday morning…however, I will be calling my pain specialist Monday morning to let him know that we need to turn the pump up…much more aggressively!

This is to be expected! It is going to take time to get the pain pump dialed in to fully be able to do its job.  I do NOT expect to be pain free…I am just hoping we can get my pain level to a 6 or 7!

I am glad that I will be able to provide my doctor with more specific information in regards to how I am doing at the current levels…and, most importantly, I know that this is temporary! We will work through this!

First Shower

When I got home and was able to enjoy my first shower since my pain pump surgery, I had a few things come to mind.

If you are lucky like me, you have a walk-in, handicap shower (complete with the extra support bars…inside and out…as well as a seat or bench and floor mat). If you do not, or have not purchased some safety items (like a seat and added handrails)….do so before attempting a shower!  Otherwise, you will need to have someone there to assist you.

Plan to take your time…there is no need to rush any step! And set a simple goal, like washing your hair or shaving your underarms (if applicable). Just the feel of the water is a huge boost for having only sponge baths for two or so weeks!!

Have your comfy clothes laid out to put on…and rest afterwards. A lot of energy is used in the shower…not to mention all the energy used going to the doctor appointment earlier in the day.

Don’t worry about any “finishing touches” (like lotion)…the only item I suggest is deodorant to complete the endeavor. For many of us, the dry skin can be driving you crazy!  Just remember…there will be time after a nap to put some lotion on your arms!

What a huge accomplishment for the day… now sit back and relax!

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.

Emotions

Below the surface

Threatening to erupt

writing-with-pen

The inevitable struggle

Whether recognized or not…

Why is there such stigma

An artificial wall per se

Associated with our feelings

That cause me to hide…

For some emotions are friends

The ability to interact

To easily express

I think you have a special gift…

To me the intensity

The incredible raw power

Harnessed within its grasp

I would rather not feel…

I channel in pieces

Through writing

The emotions that

Are churning within…

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