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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

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.

The First Five Days –Pain Pump Surgery

The primary focus after the surgery to install the pain pump is to REST.  I cannot stress this enough! The discharge paper, the nurse, the doctor…all will emphasize the importance of rest. The first three days are important to form scar tissue that will help to further secure the catheter and the pain pump.

It does hurt…although it is different.  If you are like me, this will be the least invasive surgery you have had…no muscle or deep tissues involved. As my specialist described…he used a 2 1/2 inch incision in my abdomen to create a pocket under the skin for the pain pump…another 1 inch incision in the small of my back for the placement of the catheter. The catheter was inserted and fed along the intrathecal space along the spinal column to just above my shoulder blades…he wanted to maximize the delivery of the medication for my combination of pain. (On any given day could say 60 percent of pain is located above the waist and 40 percent below the waist….)

You are told to not twist, bend, lift over 3 pounds, put arms over head…these restrictions will be in place until I see doctor for the follow up (10 – 14 days after the surgery). Since my surgery was prior to Memorial Day Weekend, it will be Tuesday before that will get scheduled. I mention these restrictions now because the first three days I literally did nothing!

A dear friend had made arrangements for meals to be delivered to us from Thursday to Sunday…there were left overs for Wednesday. This was a HUGE blessing! If anyone volunteers to help…in any way…say YES! It helped me to completely relax…knowing that my husband and son would have good food in the house to eat.

My pain specialist had said that by Saturday (day four) that the abdominal pressure and the extreme tenderness of my back should be noticeably better. He was correct about that! My back is still sore but nearly as tender as it was. I also do not feel any pressure in my abdomen from the pump.

I have no idea how my new implant looks…wearing the binder and both incision areas are completely covered with dressings and tape.  The binding on the incisions themselves offering some additional support. Will review with doctor on Tuesday…still under the impression that all will remain as is until my first visit.

I did have an extreme headache…my specialist warned me about it…said it could last two to three days. The one good thing about the headache was it went away when I was lying down. That alone, kept me in bed with pillow under my legs for support! I drank as much water as I could to help flush my system….also was strongly encouraged to drink caffeinated drinks (which help with the headache).

Now on day five, the surgical pain has greatly improved. Getting up and down does still cause a slight grimace; however, it is much easier to shuffle to the bathroom and back to my chair….using my walker. NOTE: If you have the slightest need of walking support, make sure you have a walker available! I cannot stress enough how great of an aide this is! No worry of sudden movements…no fear of balance…just an awesome tool to navigate carefully around the house.

I am feeling very excited for this new journey! I will write more in regards to how my symptoms are impacted in the near future…right now, I am keeping my focus close at hand…

Pain Pump Surgery

It is the fifth day after my pain pump surgery.  I am, I hope, just coherent and focused enough to relay my story thus far…

Preparation for the surgery was normal protocol…not food to eat or drink after Midnight the day before…my surgery was this past Wednesday.  I had discussed the idea of taking one of my pain meds the morning of…however, I ultimately opted out of it…knowing that there would be such a great concoction of drugs bombarding my system.

My pain specialist had said that I would be released to come home the same day as surgery…however, the nurse I spoke with at the surgical center told me to be prepared to spend the night in the hospital for observation. So, armed with my overnight back (which includes a comfy robe) we loaded up and headed to the surgical center about an hour north of us.

I did have a bit of a scare two days before my surgery…the scheduler called to change the time…pushed it out from 6 AM to 7:30 AM.  To me, this was a good thing…it meant a bit more sleep/rest….plus I would be able to wake our son for his next to last day of school.

The staff at the surgical center was fantastic! Genuine, professional and caring…I was so impressed! I was taken back to prep within minutes of checking in…so thankful for the heated blanket to be draped over the surgical gown. The IV was placed…I met everyone on the team…reviewed my issues with anesthesia — nausea and extremely slow to wake up. My surgeon, who is also my pain specialist, discussed placement of the pump…which we quickly determined would be placed on the right side of my abdomen. It would be the perfect offset to my colostomy on my left side.

I was given antibiotics through the IV before and during the procedure. They also called in a prescription of a 10 day antibiotic to take immediately following. There was great care taken to prevent any type of infection.

My pain specialist and the pain pump rep spoke to us about the procedure…the medication to be used…and the story behind the medication that I would be using. (Will post that on its own…)  Long story short, I would not have to stay overnight at the hospital since he had chosen Prialt…an overnight stay is only required when using morphine and/or other opioid combination in the pump.

The entire process went quickly and smoothly.  Within three hours, I was awake and alert…speaking with the nurse and my husband.  The nurse adjusted the binder (very soft and comfy) so that it would not be too snug on my stoma and my husband helped me to change into my clothes…time for the long ride home…and rest…

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