Embracing life with chronic pain and illnesses.

Archive for April, 2013

Thoughts

I am awaiting my next pre-op surgery appointment. Yes, I say this as if I have been there before…..I have. I hope that you do not have to experience so many….I hope that an illness or surgery is a one-time event. If not….welcome to those that can support, encourage, and drive away fears of those that need our strength!

Yes! These medical trials are a “gift” that we are challenged to share….that we are able to use as a way to provide strength to each other.

I do not want my thoughts to be misconstrued as heavy….it is just at the end of the day that I can reflect….to embrace the trials of the day. Yet never far is the larger impact…..the impact on our spouses….our children….our relationships.

I strive each day to be the best wife, mother and employee….yet I know I fall short of where I wish to be. My hope is this next surgery will provide the end….the last step of medical challenges…at least for a time.

I am ready to relax with my family…to hunt, to fish, to run and to play. Randy to fully embrace this wonderful gift!

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Walking In Circles

After experiencing a “Monday” on a Wednesday……I cannot help but notice that life does not present itself in straight lines. I mean really…how often do actually get to do a project or task from start to finish without a single interruption?

Haha! My point exactly! NOT! That is the game. We will always be striving to go DIRECTLY from A to B….however, life does not work that way…..we start a A…then go do D….then maybe S….then..if lucky, we go to B. : )

Embrace the circles! Enjoy every moment….every twist and turn. There is so much to be gleaned…so much to learn…to watch…to enjoy. Think about it! We would miss TOO much if we had to walk a simple straight line.

Managing Day to Day

I  am sure that I am not the first nor the last dealing with long-term health issues that pushes too hard….to far…at times.  Then of course…we do as I am now…”paying the piper”….sitting with the heating pad….knowing it really isn’t doing much….just not looking forward to the weight of a blanket on the side that cannot be touched.

I would do it again in a heart beat!  I want to meet my obligations at work….there are set things that I cannot hand off.  Then the most important part of the day comes after work!  Watching my son play baseball!  I know we will be disrupted by another hospital stay all to soon…I just cannot bear missing a moment cheering…..watching….participating!

I know tonight will bring little sleep.  I will turn in into prayer and meditation time….afterall…just relaxing will help to provide energy for tomorrow.  Tomorrow will be more low-key….no game…no important meetings at work…..just the best part of the evening…Cub Scouts!  Smiling happy faces…the boys laughing and enjoying each other…learning and growing!

This is the daily struggle…the day to day that we “manage”……as we as parents…..manage our illness/sickness/pain…..our children do not realize the powerful role THEY play.  Our kids are our inspiration…..our joy….our angels….that assist us each day.  Overpowering the bad with the good….providing the “misdirection” that we need to lose focus on what we ourselves are dealing with….taking us “above and beyond”.

Life’s Roller Coaster

For those that can understand…..at times I feel that I am repeating myself….that I am rehashing the same thoughts over and over…..yet at the same time the continuous roller coaster of life has me experiencing things over and over from a different perspective.

Yes…I have not experienced the norm.  I have undergone “unusual” procedures due to my body being so “unnatural”.   Yes…not normal.  I have had pelvic organ prolapse repair (due to a prolapsed rectum)…..repair of a peristomal hernia……then the dreaded “tumor”….which was initially disguised because of huge fluid buildups on my ovaries caused by the surgeries.  I do have a tumor….thankfully, it appears to be benign……however, it is unsettling!  I want that foreign body out!  Who cares about the ovaries!  I know I cannot have any more children….we are blessed with our angel.  My uterus is gone….just want the “invader” and the potential of anything else out!

The issue with me is my uniqueness!  I am not the norm. My docs are learning from me…….I am just hoping that I do not have yet another underlying condition that will also have to be dealt with.   That is my hope.  However, I am not in control. God is.  My hope is that the experiences I am having will somehow help someone else.

My son was sitting on the edge of my seat tonight.  He summed it up well…”Wow!  Are other parents of kids or other kids viewing your website or blog?”  “Are we helping someone else?”

Are we?????????????

Expectations

As anyone dealing with unanticipated health issues will know….or better yet experience….expectations…..OUR personal expectations of our treatments, tests, etc. change.  In my experience, once one hurdle is met….the recovery begins…to be hit with another hurdle…..can be frustrating…disorienting.  The best way to think of it is as a “roller coaster”.  Only this time…it is not the exhilarating fun kind!  It is taxing….it is wearing….it is disruptive. It makes life a challenge….it forces us to dig deep within ourselves to wear that smile….to go through the day-to-day motions.

It is hard to not be overwhelmed by this! I can best sum this up as my latest experience.  I was feeling better excited about the pain-free life….to get back on track with all I wanted to do….exercise…prepping for our family outings.  Then getting hit with the “truck”….the word “tumor”.  The following discomfort, nausea, just overall “nasty” feel…….really took its toll. Seeing our son’s reaction REALLY took its toll.

Now….after fighting for this series of Lupron injections….I feel like a “Phoenix — Rising Above the Ashes”…..I am strengthened (although not feeling at all better)….ready to fight (yes more spring in my step)……..I am in control (no…not really…just…back in control of my emotions…..of how I am seeing my world and interacting with it).

Hang in there!  Whether you view this as a “roller-coaster” or as “ebb and flow”……when we are hit with news….it takes time for us…as well as our family’s to adjust to the news.  Once a path is started….empower yourself!  Take control!  Know that you and your medical  team are working hard to do what is best for you.

Then….ENJOY your family!  ENJOY your friends!  ENJOY this precious gift we share…called life!

After 1st Lupron Injection

First Lupron injection yesterday.  Faced with the reality that nothing will be a quick fix.  Could take two weeks….could take until the second injection before symptoms (the discomfort/pain) is relieved.  Will have evaluation by the doctor along with 2nd injection mid-May.  Doctor will check to see if the tumor is shrinking…and discuss what difference, if any, I am experiencing.

Crazy how the trip to and from the doctor can wipe me out so much!  Never thought 3 hours in the car would continue to “kick my butt”!  Did go to the store for some needed items today.  Even assisted our son with some research on the web.  Really need to spend some time lying down and resting tonight.

Last night was rough for sleep….it appears that I can get some solid sleep between 2 and 6 AM…..the rest of the night is in and out.  Really driving me crazy to only have one side to sleep on….I know I shift positions because my left side just goes to sleep or gets so uncomfortable from continuous weight on the one side.

Find myself wishing for a “transporter”…. LOL

Patience and Persistence

As I am sure you all are acutely aware…..those of us dealing with unexpected illness/surgery or ongoing chronic issues test our patience……test our tenacity….test our ability to deal with our duties in life. It can seem that we are constantly fighting….fighting for the medical tests, procedures and/or treatments we require. Then add the fighting to keep up with our daily obligations….our jobs and most importantly….our family obligations.

This battle is hard fought! We are worn down by our illnesses….the pain…the extreme discomfort. Yet we are also hiding this as best we can from those around us. We do not want to appear weak and needy….we do not want to admit that we cannot do everything for those around us that we want to.

I know I have referenced these thoughts and feelings before in other blogs. It is one of those recurring themes. It is that dilemma we that battle with chronic issues are at odds with at all times.

My roller coaster goes on and on….new things rearing their heads. I am so thankful for my family, friends and work that are so supportive. I am becoming more outspoken….I am learning to ask for help…I am asking friends to help with shuttling our son to and from his obligations. I am reaching out and embracing our Church Family. Maybe…this is the lesson that I am meant to learn….that we are not in this alone. That by sharing…by speaking up and sharing what we are going through….that we can touch someone else…that we can empower someone else to be a helpmate.

We do not give in….we do not give up! We smile when we greet those around us….we are given the gift of another day….to enjoy daily gifts we are given…..like a game of Uno with my son…..to listen to him laugh….to see his smile! To know that even though we are given a tough road…..we are also given miracles to enjoy along the way!

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