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Awake?!?!

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…

 

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.

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!!!!

Results Are In!

The prep for the pain pump trial was very basic…just required a typical fasting…no food or drink after midnight the day prior. My pain specialist had approved a few sips with one of my meds prior to 6 am to help with the travel to the medical facility where the trial was to take place (a little over an hour drive time away from us).

I was required to have someone drive me and to have someone with me for 24 hours after the procedure. My husband was able to arrange his work schedule around those requirements.

I was very anxious of course! I did not sleep well the night before…as is always the case for me prior to a procedure.

Upon our arrival, I did not have to wait very long. My husband wheeled me back to what would be the area I would return to after the procedure. The nurse reviewed my history, asked the typical allergy to medication questions we are so used to and took my blood pressure. The nurse also placed an IV in my right hand in case I would have a reaction to the medication to be used in the injection.

The Medtronic rep then came to visit with us. We had a good discussion…he asked me questions regarding my knowledge of the upcoming procedure…we spoke about what would happen and rough time frames if the trial is successful…he was very courteous, professional and personable! There was no sense of being rushed…he wanted to make sure that all of our questions were answered.

It was then that I learned that he was my dedicated Sales Rep who would be present for the surgery if the trial was successful. He is also partnered with a clinical specialist. I was very impressed with the company structure and how Medtronic is set up to not only provide a product for those of us who have run out of options for our pain treatments, but to have a dedicated team who is assigned to us to support us…who genuinely cares.

By this time, the single pain med I had been allowed to take was quickly wearing off! I am thankful for the wonderful caring staff of my pain specialist…I could not help but be a bit grumpy!

I was taken back to the procedure/surgical room. I did not have to disrobe…just had to lie face down on the table. My back was then prepped with the typical skin cleanser…then told to expect a pricking sensation from the needle as the selected medication was injected into the epidural space. To be honest, I barely felt the needle or the injection!

I was then taken back to what would be my recovery area. I was very tired of course so I was awoken in about 45 minutes by my pain specialist to ask how I was doing. It was at that moment that I realized that I did not have pain in my feet, my right leg or hips!

Needless to say, it was completely surreal! The pain in my upper body was very present but no pain sensations were present in my lower body!!! As my pain specialist explained, he had placed the injection in the lower spine (picture an epidural) so my lower extremities were targeted. I also did not exhibit any type of adverse reactions from the medication.

We were ecstatic! The trial was going beyond our expectations! I actually walked a short distance using my wheelchair as a walker and felt ONLY the weakness of the lack of muscles in my lower body! It was exhilarating, exciting, unreal…like all birthdays and every Christmas of a lifetime being celebrated at once!

I was kept for four hours after the injection for monitoring. During that time, the nursing staff provided crackers and water to help calm my hungry tummy. They had quite a selection of snacks to choose from, so I was easily able to find something I could snack on that was within my dietary parameters.

At this point, it was just a matter of how long the relief would last. Would it last a handful of hours? Would it last a day?

On the way home, I felt the tell-tell signs that the pain was on its way back. Once home, I felt like had been hit by a Mack truck…then beaten with a baseball bat. Yet no amount of pain, could take away my elation! The pain pump trial had been a huge success!

Now I am awaiting the scheduling of the surgery!

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.

Lessons of Chronic Pain

I have learned so much in dealing with chronic pain…whether it be Pelvic Floor Syndrome, Rectal Prolapse, Spastic Sphincter, Fibromyalgia, Chronic Pain Disorder, IBS-D, Polyarthralgia, Colostomy, Hysterectomy, Benign Tumors, fluid build-up, Peristomal Hernia…there have been many lessons.

I know that our Heavenly Father has used these illnesses/conditions to teach me many things…the lessons have not been easy…it has been a rough road that has had its many challenges…however, I have had the support of family, friends and, of course, our Heavenly Father.

I have learned:

  • To be humble
  • To allow others to do things for me
  • To say “No”
  • To be patient with myself
  • To take naps
  • To appreciate small talk
  • To not take anyone or anything for granted
  • To appreciate the view through my window
  • To enjoy a ride in the car
  • To accept my limitations
  • To understand that I cannot always follow through with our plans
  • To know that there is no way to predict how my body will feel
  • To know that I can choose my attitude
  • To better appreciate time in prayer
  • To take more time to listen
  • To prepare simple meals
  • To ask for help
  • To smile no matter how I feel
  • To always appreciate a hug or gentle touch (no matter how much it hurts)
  • To become my own medical advocate
  • To speak up for others with similar conditions
  • To never give up
  • To see the best in those around me
  • To encourage others
  • To be sincere
  • To use my wheelchair
  • To use my walker
  • To use electric carts
  • To see medication as a tool to help improve my quality of life

I know that there are many more…my mind now draws a blank…

Each step we take…to allow others to do for us…to utilize all the tools that we have been given…is a step in improving our mental health, our relationships, and our confidence.  Our bodies may fail us; however, our faith can keep us strong.

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