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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!

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…

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!!!!

An Example

As you know, 2017 has been off to an extremely rough start for me. This morning, however, proved to be a great example of how my life has changed because of Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/Neuralgia.

If you saw me this morning, struggling to walk a short distance in the yard, you would never guess that at one point in my life I was running 7-10 miles in a day! Instead, you would have seen someone struggling to lift her right leg…moving awkwardly with jerky motions….pausing for rest…an intense grimace on her face.

I did manage to make it back into the house to my chair…there will not be another “outing” for me today. I am dizzy and very out of it.

Do not feel sorry for me! Just know that I may look “great” on the outside; however, that is FAR from the real truth!

Wave Upon Wave

As the waves

Crash upon the shoreline11803762-sea-waves-breaking-on-the-rocks-stock-photo

So the waves

Of pain cascade throughout

Transforming every nerve

Into a volatile eruption

Senses overwhelmed

As spasms wrack an all ready tired frame…

Relentless crashing against the rocks

The waves continue to pound

As a hammer yet without mercy

Pounding and changing the shoreline

Demonstrating such power
As it rewrites the coast line

So with the intensity of pain

Every fibre of our being

Crying out…rather screaming

Albeit a silent scream

Unheard by human ears…1081-1242414452ggmy

Tide pools are hidden

As the waves come in

The tide ever rising

The sand disappearing

Its watery blanket

So the transmission of activity

Nerves not relentingThe grimace…the groan…

The feeling of weakness

The tears that well up

That refuse to fall

Release from the tight grip

Wishful thinking…forcing a bowed head

Prayers for relief

Just the slightest…please…

Waves continue

To batter the shore

The intensity will

It must refrain

This heightened level will not keep

As prayer for strength

To navigate this path…

Prayer

Prayer…it can be such an integral part of our lives.  I know for me, prayer is a vital life line.  It allows me to hand over my fears…frustrations…disappointments…concerns…as well as all that I am thankful for.

We learn many formal prayers….”The Lord’s Prayer”….”The Glory Be”…as Catholics, many more are learned…”The Hail Mary”…”The Apostles Creed”…”The Divine Praises”… I am sure several others have come to your mind.

We also learn to pray informally.  We are often told to use “The Lord’s Prayer” as a template for our own prayers…we are encouraged to use our own words…to speak to God as if he was in the room for us…like we would speak to a friend.

Often we can find ourselves in a rut…saying similar words as if by rote…going through the motions…not really allowing ourselves to open up and speak with our hearts not just our minds.

Many of us were taught the following pattern for prayer (referred to as A.C.T.S.):

Adoration – “Praise be to God!” -Psalms 68:35
Tell God how much you appreciate Him.

Confession – “If we confess our sins, He is faithful and just, and will forgive us our sins and purify us from all unrighteousness.” -1 John 1:9
Tell Him where you have fallen short. Be as specific as possible.

Thanksgiving – Always “glorify him with thanksgiving” -Psalms 69:30
Thank God for His love, His faithfulness, His patience…express gratitude to Heavenly Father, Jesus Christ and the Holy Spirit.

Supplication – “Make your requests known to God.” -Philippians 4:6
Tell God what is on your mind…whether it be for yourself…a family member…a friend…you can also just speak thoughts that you are having.

I know that I often pray informally…yet there are many times…especially when Fibro Fog is thick…or my mind is wandering all over…I find comfort in reciting one of the formal prayers…even if I cannot get all the words correct…it helps me to relax…to shift my focus.

Our Heavenly Father knows our hearts…He knows our needs…He wants us to commune with Him.  Whatever type of prayer…as long as it is from the heart…will be heard.

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