Embracing life with chronic pain.

Archive for June, 2013

Lactose Intolerance

Well….it appears that we get to embark on yet another adventure!  Our son has been displaying all symptoms of Lactose Intolerance…..the bloating, the gas, the diarrhea, the nausea, the inability to gain weight.  Yes….it might be something more…..at this point just treating it as lactose intollerance until we can get in to his doctor.

Our son was premature….I had the worst case of HELPP syndrome seen in the State of Oregon….the result was my body shutting down (dying) while his development was stopped in an attempt to protect him from what was going on in my body.  An emergency  C-Section brought our son into the world.  The C-Section and subsequent infusions and experimental meds saved my life…..all this I was oblivious to….until my husband told me the full story!

As I am reading about Lactose Intolerance….I am learning how crucial those last 3 months of development are for the developing unborn child.  I see that he can be at risk for more serious type intestinal issues. With my history and his start…..my prayers are that God will see to it that he just deals with the minimal impact of no longer eating dairy products!

The total outcome is…of course….out of my hands……out of my husband’s hands.  At this point, we must await his doctor appointment.  The dairy free diet has been a tremendous improvement!

He thinks the chocolate soy milk is fantastic!  He loved the mac & cheese I made for him (using egg noodles, rice milk and soy cheese)……we purchased soy ice cream for him today……his special treat for tonight!

I want him to understand that obstacles put in our path….whether they be allergies, inabilities to process, surgeries, etc. are opportunities!  Each is an opportunity to learn….to grow….to gain a new perspective!

I want him to view life as a positive…..as a window of colored glass! There is no right or wrong color!  Each color has its own beauty….its own uniqueness….

Yes….our son will have to learn to read labels….to watch what he eats….to learn alternative ways to cook and prepare foods.  Nothing new to those that share this health ailment…or rather situation.

His excitement at reading the labels…at embracing this situation….offers me hope that his father and I have been able to play a positive role…..that we have been able to show him  that we control our attitude…..or perspective on life.

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Tired

Yes…today my body said enough!  Enough with the touch of work you are attempting this week….enough with the walks you have taken….

A wall was reached today.  Mind and body are spent…..amazing how our body’s just step up and say….”That’s it!”

It reminds me of how much energy my body is using to heal itself.  Silent….steady….the body works hard to recover…..the owner of the body can be oblivious at times!

Feeling a surge of energy yesterday, I walked an extra lap around the house.  I let myself walk down a store aisle yesterday….instead of riding on a cart!

Today my body says “I’m tired!”  “We have done too much this week!”  Even the careful baby steps….with the rest….with the caution exercised.

Sitting in my chair….relaxing with feet up…..I can’t help but smile to myself.  I am reminded today, yet again, that I am not in control…..that I do not have power…..that I am physically quite limited.

These limitations and the tired…tired body….cannot hide the smile….the joy I have in watching my son dancing around the house…..watching his face light up when his Daddy asks him to go play catch outside…..to listen to his laughter…..

Yes….body is tired……mind might be a bit numb……heart is alive and well!

Humanness

Having chronic pain, a chronic illness, or recovering from surgery tests the strongest of spirit!  It definitely brings out the best and the worst (at times)……there are times of tears  and voiced frustration…..of looking above and saying “Why Me, Lord?”

The ability to rebound….to regain our strength….to regain our direction….to renew that inner strength….this is what being human is all about.  This is the time that The Lord can reflect and touch others through us.

By giving in at times….to admitting we can do nothing…..we open the door for opportunity and Grace.  We open the door for Blessings to come our way.

Yes…there is a fine line to walk….that edge of self pity…..that negative shoal.  On those days when I have done more than I should, after a long trip to the doctor’s……or just those inevitable days that the body is not happy……that is the time to focus on an inner quiet prayer.  One of my favorites is simply…..”God please grant me Grace to persevere through this day”.

Rolling down the window (if going to or returning from a doctor’s appointment) to breath in the fresh air…..or if at home to get a window opened….light a scented candle….to relax and to allow time to pass.

This passing of time during these days can be the most difficult of all!  Afterall…the world says we are to be busy…to be on the go….to somehow always be doing.  Wait though!  By allowing ourselves the opportunity to “regroup”……to allow ourselves to be lifted up from our low periods….we are given a greater gift than the world allows itself!  We are given God’s precious gift of Himself, of our family, of our friends……gifts that those of us who are dealing with “difficult circumstances” so appreciate!

Life’s Road

Resting in my comfy chair recuperating from my latest surgery I can’t help but think…..when I lie in bed at night after prayers are said….my mind races…or rather wanders…..thoughts, experiences, dreams.

My restless mind reminds me of life…..the twists and turns….the ups and downs.  Of decisions, life’s lessons…..relationships…..friendships…..the unseen, yet very felt, Hand of God.

Each day provides opportunity….choices….decisions to be made.  Our goal is to make the most of each day….to make the best decisions we can for ourselves and our loved ones.

To choose to embrace challenges presented to us….to turn them into opportunities that allow us to grow….to become stronger….to give more of ourselves….to appreciate every single moment of every single day.

Ostomy

While waiting in the surgery preparation room, the door was ajar.  As before any surgery, it is a bit nerve wracking….sitting with your loved one….talking…answering the questions nurses and other staff must ask….reviewing the upcoming procedure….saying your name and birthdate….over and over….just to verify that you are you.  (A necessity…I know!  I would not want to mishandled!)

I hear a man’s voice as he is passing in the walkway…..”I would never want a bag!  That would be the worst thing that could ever happen!”

First off….there is obviously worse that could happen!  For me…the thought of not being here with my husband, son, family and friends would be the worst!  It is so sad that someone has such a preconceived negative notion about “living with a bag”.

If you are an ostomate, there is no doubt that there is a transition….even if it is something planned and prepared for…..as was my situation.  I was in such horrific day-to-day pain that I was looking forward to the hope that it would help!  I took time before the surgery to educate myself.  I read all I could find on-line….signed up for OstomyLand and read all the postings possible.  I visited other websites and support groups….also read postings on various medical center websites.

I knew that I was going to go through something major…..I knew that there was a chance it could have to be permanent.  No doubt, the first surgery was complex….with the repair of my rectal prolapse, removal of uterus and the colostomy.  It was strange to wake up with something different…a bit foreign.  The Wound Care Nurse was awesome!  Her support and explanation of how to handle my new stoma was fantastic.

It did take time to gain body confidence.  There were questions from loved ones, friends….and most importantly from our son.  I approached each as an opportunity to share (as appropriate)…..obviously some individuals were given some details….others just a “doing well”.  With our son, however, we chose to be totally open with.  I wanted him to understand that what the doctor had done had improved my health….that it was a positive.

Our son, too, was curious!  He wanted to see all parts and pieces….he wanted to see the barrier….the bag.  He wanted to understand how it was attached…how it worked.  He thought it was “Cool”!

I did deal with a “set back” …..a peristomal hernia.  My husband created a wonderful hernia belt that worked well with my choice of barrier/bag system.  I did go through surgery to have it repaired……

My underlying extremely rare condition to continued to rare its ugly head…..the pain back….even more intense.  I again saw my doctors scratching their heads….their eyes full of concern…..not knowing what could be done.  My constant spastic sphincter (which now was at least 5 years going strong) was unlike anything.  I asked and asked to just have it removed.  Of course, this is VERY extreme…..and would make my ostomy permanent.

I again searched and searched…..read blog after blog…..and continued to dig and interact  with other Ostomates.  My search led me to one other individual….on a different continent who had shared his story….who had had the very surgery that was asking my doctor to do.  The surgery had helped him.  Armed with this information, I again approached my doctor.  After a long discussion, the decision was made.  I had nothing to lose and everything to gain!  So we went for it!

I awoke with no “normal for me” pain!  I was thrilled!  I healed well….my body adapted.  I am even now more thankful for my stoma!

My health issues were not over….no…as anyone reading these blogs I write will know.  However, my quality of life has improved SO much from having a colostomy……at times I wish it could have be done earlier!

The ostomy has provided such opportunity and flexibility!  The products are comfortable and I am not restricted.  I am now looking forward to resuming my exercise routine…..walking and running….hiking…fishing…hunting.  I know….I have 5 more weeks before I can return to work….to start easing back into an active lifestyle.  I will pace myself for a good, solid recovery.

If you or a loved one find yourself in a situation dictating your life to change, please take the time to educate yourself.  If it is an unplanned emergency, please take time to read all you can.  Remember…life has many twists and turns…..our attitudes are SO important.  Be positive…embrace the change….and know that you are not alone!

Blessings Around Us

I had hoped to be able to help others dealing with a sudden illness, surgery or dealing with a chronic health condition by starting this Blog. I have found so much more!

The friends I have made….fellow bloggers dealing with their struggles…..each offering inspiration….sharing encouragement…..sharing themselves. What a wonderful blessing you all are!

Other blessings of course….my husband…..my son….our families (parents, brothers, sisters, sister-in-laws, brother-in-laws, cousins, Aunts, Uncles).  Our friends……our Church  family……I am so blown away by the loving support!

This struggle with pain has opened my eyes to a deeper appreciation for those around me.  I am awestruck and humbled by all the support I have received and continue to receive.

I am deeply appreciative and thank God for everyone whose lives I have been blessed to touch.

Each day when eyes first open…..breath in the sweet air…listen to the sounds all around….and submerse yourself in all the wonderful blessings around us!

Post Op Appointment

It was a good post op appointment!  Body is on track…..will definitely be a full 6 week recovery due to all the docs did during my lengthy procedure!  Received a copy of the pathology report….I like to review and read all the details.  They removed 59 grams tissue/tumor/organs….Crazy!  In addition, I know they removed a lot of adhesions.

Always nice to have the reassurance that the current discomfort or pain is the body’s response of the surgery.  Also reiterates how much was done by the doctors during the 4 hour procedure.

Doctor is still very concerned about residual nerve pain.  She is crossing her fingers and is waiting for the six month mark. I am at such a high risk for a long-term nerve condition.  I appreciate her concern and most importantly….her candidness!

I am once again so impressed with the quality of care from my doctors and nurses.  I am also so grateful for family and friends who are such a support during all this craziness!

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