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…)
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…
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.
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!
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!
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!