Embracing life with chronic pain and illnesses.

Posts tagged ‘health’

Life Changes with Fibro

The most difficult challenge with Fibromyalgia, Chronic Pain Disorder, Neuralgia and the many other hidden conditions/illnesses that plague us, is the reality of how our lives change.

broken heart love sad
Photo by burak kostak on Pexels.com

As I have written in the past, we do go through a mourning process….just like when a loved one dies.  It was very helpful for me to review the 7 Steps of Grief…not that it makes it easier…it reinforced the fact that I was not “going crazy”.

I was SO unprepared for the realities that would come with my Fibro and other conditions.  My Faith, family, friends, and medical team have been lifelines as I have traveled along this narrow and twisted path.

  • Loss of Job — I could no longer physically or mentally function in a productive manner.  (I have learned to take advantage of those moments when the “brain fog” lifts ever so slightly.)
  • Pursuing Disability — This turned out to be very long, challenging, and stressful.  In my case with Fibromyalgia and Neuralgia (without a known cause), it took over 30 months.
  • Financial Implications — Such a long wait for Disability drained our reserves, and forced more dependence upon credit. Slowly and steadily we are turning the tide.
  • Divorce — The reality of the rift that had developed. My son and I are on our own. This transition to being a single parent has been rough.
  • Driving Assistance — I am so thankful for the friends I have who take joy in driving me to my injections when needed.  So glad that these tend to be about 3-4 month intervals!


Rain Brings…


Rain brings an increase in temperatures

As it washes snow off the lava…

Rain brings the wind blowing the tree limbs

While cascading the water down the glass…

Rain brings the storm from the Northwest

As it batters the roof and races down gutters…

Rain brings increased ringing in my ears

Drowning out external sounds with its deafening pitch…

Rain brings the joint pain out of remission

Removing the relief of the higher elevation…

Rain brings elevated pain levels

As my body screams out for it to end…


A “New” Tomorrow


As the sun sets

Majestic colors blanket the sky

The clouds seemingly ablaze

Before giving way to darkness…

So goes my battle with chronic conditions

The intense battle of the past several years

Is giving way to renewed hope

The darkness of unimaginable pain

Has lost its heavy grasp…

So goes my battle with chronic pain

The heartfelt prayers of others

In tandem with my own

Clearly demonstrate God’s hand

As I find myself filled with great anticipation…

So goes my battle with life changing illness

The precious gift of understanding

Provided by my medical team

Peace is granted in knowing

There are no answers…

So goes my battle with unknown conditions

The complexity of ailments

Magnified by extremely, overly sensitive systems

Prevent the use of most medications

The few options have been skillfully used…

So goes my battle with controlling symptoms

Addressing conditions that could be calmed

Along with carefully choreographed days

Fan the flame of hope restored

To embrace my “new” altered self…

So goes my battle with my new reality





Don’t Underestimate the “Tools” Provided

In the early morning hours while saying a prayer, images were brought to mind.  It was as if I was watching a slide show highlighting the path of chronic illness that I have been traveling.  So empowering and providing such a tremendous peace, that I must share!

With spot light in hand, God provided a glimpse…a “bird’s eye” view of my path.  It was like looking at a map.  I could see that with each boulder, rock slide, downed tree, or gaping hole there was a small, hand drawn box.  The boxes ranged in vicinity to the obstacles…sometimes it was next to the obstacle, sometimes it was a mile…yet with EACH impediment there was a box associated with it.

This personalized Isaiah 64:8 — “But now, O LORD, thou art our father; we are the clay, and thou our potter; and we all are the work of thy hand.”

These boxes were the many “tools” that have been given to me!  I am truly humbled and overwhelmed as I ponder this revelation…friendships, medications, Bible verses, change in attitude, phone calls, songs, surprise visits, text messages…

Some of these “tools” reappear to demonstrate how some are repurposed like my hernia belt that my husband had modified for me due to my Colostomy.  This belt is now providing some relief to the Sacroiliac joint that is inflamed as I await the appointment for a steroid injection to reduce symptoms.

As I await results from additional testing, I am thankful for the “tools” that God has granted to me, especially for my family, friends, and medical team.


This was the first year that our son was not excited about school. My only hope was that he would start his advanced math soon.

We had experienced our first full summer. This was the first summer in so years that I was healthy! I felt good. I had the opportunity to test myself and to test boundaries. I learned that I do not have limitations! (I have modifications!) I have been empowered.

Our son was able to begin his advanced math….he goes to the Middle School to start his day….then goes to the Elementary School for the balance of the day.

Yeah!!! His attitude and demeanor have improved……even though he is still hoping for more of a challenge….at least he has some positive distraction at school.

I now see that I get to help our son gain patience!

I was the frustrated perfectionist as a youngster….who is now blessed to be the mother of a perfectionist!

An “Ah-Ha Moment”

I must second….or third….or fourth comments I have seen posted here. I joined WordPress to share….I was hoping that I would be able to share what I have been going through…my illness, chronic pain, the procedures…the surgeries…..to help someone else. I wanted other families to benefit…..knowing how much my experience has impacted our son.

What I have found…is not just a way to express myself….my experiences to share……I have been so touched by those that read my blog….those that are following my blog. Their comments…their encouragement! It is truly amazing!

Our WP world is the perfect example of the positive that today’s technology can provide! I can post my thoughts…concerns for the day from the US…..and it can be read….throughout the United States, Canada, Germany, China, India….the world! We can reach out to each other! It does not matter where we are physically…..we are able to share and to connect WORLDWIDE!

This was my Ah-Ha Moment today in reading a response to my response! I am more connected…..I feel that I have expanded my friendship boundary through WP.

I know that God had a lesson to teach me……I can only hope that a part of that was this awakening. To know…that our lives touch…..even if we are more than 1,000 miles apart….or are a Nation or more apart.

We are brothers and sisters on this earth….walking paths to the best of our ability. I know that I can say that I have been touched by others “worlds” away. It is truly amazing….a huge blessing…how we through today’s technology can touch another’s life. To provide support….encouragement…..care…..to others walking similar (and yes, some dissimilar) paths.

I Just Have to Smile

As if working my first 6 hour per day week was not enough……I noticed that my right leg was not wanting to move properly. I was just contributing this to the swelling moving around….the healing that is still occurring. Then my husband said….isn’t that where your shingles act up?

Of course he had a point! I have also had many episodes of shingles (this would make 6)….and the right groin area is always the lead! I started my drug treatments for shingles to find that I am having relief! My leg is moving better….albeit by end of day today my leg was “lazy”…..but then so was my tummy! LOL

My entire body is tired. And as my husband put it….”Your body has been so overtaxed….so overwhelmed by all it has gone through……no wonder your shingles are acting up!”

Now I am forcing myself to sit and relax. I am in my easy chair…..catching up on email and, of course, blogging! It is so hard for me to sit idle when I feel that I should be on the up side of healing. Yet….I am being shown AGAIN that my body is unique….that I have to be cautious of all aspects of my health….that I must allow my body to fully recover….recoup from these ordeals!

Thankfully….my meds are helping. It is making a big difference in my right leg…..further acknowledging that my shingles were “visiting” again! Crazy! It also further reinforces that my sense of pain is so out of whack! I do not even register the discomfort. I just know something is wrong. Just so glad that I have a wonderful husband who can be so intuitive! So helpful!

I now as stated above…just have to smile! I am blessed! God continues to show me that! I am blessed with a wonderful, caring husband…..an awesome, caring son…..terrific friends and co-workers…..and fantastic family!

My body just makes me slow down……forces me to take time to enjoy the blessings that God has provided.

Insurance Update

Well….low and behold…my hiccup was actually caused by doctor’s staff.  Person responsible to place the order for the Lupron did not follow through.  Found this all out when going to appointment with my other specialist (colorectal specialist).  Talk about frustrating!

The positive side is my colorectal specialist is in full support of the Lupron injection.  He is hoping, like I am, that the injection along with the Neurontin will take care of the pain/discomfort I am in right now.

He said he will be in total support of removal of the ovaries and tumor if the injection is successful. It will mean that we have found the “culprit”!  Now I am anxiously awaiting the call to set up the appointment.  I will most certainly call my other doctor’s office Monday morning if I do not hear anything tomorrow!

Spoke with Doctor Today

Well…my story is not yet over. The additional fluid build up that we anticipated was happening is not the case. CT Scan showed no additional fluid…just the small amount we knew was left.

I am once again causing my docs to scratch their heads. I could be dealing with residual nerve pain….the nerves continuing to fire even though situation is cleared up….will be seeing my other specialist…just waiting for appointment time. Docs are also talking…in the mean time, I have to take pain meds….am told that I must keep on top of the discomfort.

I am not good about taking drugs. I have always just focused my mind and selected to “ignore”…however, with current situation it is not in my best interest so I will pick up my meds in the morning and do as doc asked.

Hopefully adding the drug treatment until we can get what is going on truly diagnosed, will allow me to get some much needed rest. I know the reduced sleep is never good. Must sleep to allow the body to recover. What a crazy cycle our body’s can get into!

Why I Started This Blog

A few nights ago, our son was not quite himself.  After speaking with him for a while I found that he was upset about my current health battle….it has him worried….scared.  He is ready for me to be back at full speed!

Once he was in bed, I went on-line to find some resources for him.  I know that I have spent a lot of time over the last 14 years researching……especially the last 5 years when my health issues all came to a head. I was greatly disappointed in what I found.  I could not find much for kids of parents with illnesses or surgeries.  (Yes…a lot for cancer….however, my situation does not fall in that category.)

As parents, we have been honest with our son….talking to him…making sure that he has met my doctors…..letting him see that I have support and people working to make me better.  However, he sees his friends….with their parents going about their daily activities without the restrictions that poor health….or intermittent health issues cause.

I have dealt with anal fissures and spastic anal sphincter for over 14 years…..numerous procedures (fissurectomies and even sphincterotomy)….dealing with flare ups in between.  Then all came to a head about 5 years ago……extreme pain….trying to work and keep up with family life! (We are avid outdoorsmen!)  Three years ago doctor tried botox injections…..nothing worked….nothing even came close to touching the constant, severe pain…finally diagnosed with rectal prolapse!

In August of 2011, had my first major surgery…..total pelvic mesh repair with removal of uterus and colostomy (at which point was considered temporary).  That took care of the prolapse….however, it did nothing for the pain.  The spastic anal sphincter would not relax!

Within a few months I developed a peristomal hernia…..that in addition to the horrific pain   I was in was just overwhelming!  No medication…..no pain management/therapy made a difference.  I then underwent my second surgery to repair the peristomal hernia.  It was a relief to just be back to my constant, painful life.

I spent nights after our son was in bed searching….trying to find someone somewhere who had dealt with something similar……then finally discovered someone in Europe…..armed with his story and results I spoke in earnest with my specialist to take the ultimate step.

In October 2012,  I underwent my third major surgery….to remove my sigmoid colon and anus…making me a permanent ostomate.  I woke up after surgery with NO PAIN!  I wanted to shout…to dance…..my doctor did not believe me because the difference was so extreme!  WOW!  The first day in so many years with no pain.

My strength was returning….I was starting to exercise….we as a family were talking about camping trips we would be able to do…..then I felt discomfort in my abdomen.  Well….I figured that my ovaries were just acting up because of my hysterectomy and the hormonal support quitting.

Saw the doctor who ordered an ultrasound….then within a couple days I was back to the doctor to be told that I had tumors on my ovaries!  Talk about being hit with a brick!  Due to my unique situation (so many major surgeries and all the repairs inside), I was scheduled to meet a new specialist…..

New doctor ordered a CT Scan….wanted to rule out any possibility of fluid pockets or a combination of fluid tissue growth.  The scan showed fluid!  Two large pockets….one on the left side the other on the right.  So next step was what they call a CT Biopsy…..doctor drained a lot of fluid and then I was outfitted with drain tubes…..that I had for almost 2 weeks.  Felt better with having the pressure relieved.  There was some fluid left…..the hope was that my body would absorb the remainder.

As you can guess….my story is not over.  The discomfort returned quickly.  Follow up appointment resulted in scheduling another CT Scan…..the guess is the fluid is building back up.  Looking at another round of tubes followed by a scarring agent injected to the sites to prevent further fluid build up.

Doctors really want to put off another surgery since I have had so many so close together.  I am now anxiously awaiting the next step…..hoping for the tubes and scarring agent!

Our poor son now sees me doing all I can to try to keep up with work and doing what I can with him….however, I must rest so much in the evening and weekends due to my body’s status…..

I hope that my story will help you!  That this blog can become a helpful tool for other families dealing with health issues….that are disruptive…no matter how much we as parents try to be “Super Mom” or “Super Dad” as we battle away with our bodies!

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