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Archive for May, 2017

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.

It’s Okay!

I awake in the early hours

To the throbbing and stabbing

Coursing through my body

I take leave to crawl into a hot bath

…It’s Okay!

As we watch a favorite program

Sleep overtakes me

Unable to keep eyes open

I have no strength to fight

…It’s Okay!

Plans are made

To spend time with friends

Nap taken and extra rest

Do not prevent a flare

…It’s Okay!

Apologies sent

No need for self doubt

There will be other chances

Our family and friends understand

…It’s Okay!

Hidden conditions are in control

Our bodies dictate actions

We are forced to be patient

To live within the invisible boundaries

…It’s Okay!

There are times we cry

We battle with frustration

We struggle with isolation

We wrestle with guilt

…It’s Okay!

We cry out to God

For His peace and comfort

We hold tightly onto our Faith

Knowing our path is fraught with boulders

…It’s Okay!

We deal with thick brain fog

With vision that can blur

Often unable to remember

Or use incorrect words

…It’s Okay!

 

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…

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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