Embracing life with chronic pain.

Posts tagged ‘flare ups’

Listen to Your Body

The most difficult thing we learn with chronic illness/conditions is to listen to our body. It does not happen overnight…it takes time…and going through the cycles…then one day you awake to find yourself recognizing the pattern.

I have finally recognized not just one…but several patterns.  The most challenging to me emotionally is the following pattern: long lasting flare (3-4 weeks); severe bladder infection; extreme fatigue; head cold; extreme fatigue; back to my “normal” — resulting in a cycle that can last a couple of months.  Another pattern: flare (1-2 days); extreme fatigue; back to my “normal” — a cycle that will last 1 to 1 1/2 weeks.

Being able to recognize what is happening and what will possibly (or probably) happen next, can allow us to shorten the cycle. No, not always, but it does some times. At the very least, it can calm our minds and lessen our feeling of guilt as we give ourselves permission to rest…take a nap…ask our spouse to bring home pizza…allow a friend to bring over a meal.

It is also important to verbalize what is going on to our immediate family members. I have found this helps our son a great deal! He is reassured and very supportive when I open up…let him understand what is going on and that it is temporary.

Don’t get me wrong, it is still frustrating…we can still wrestle with guilt…as we lay low…allowing our body to rest…using whatever treatments work for us (hot baths, hot tub, sauna, heating pad, etc.).

Take your time…listen to your body…and, most importantly, be patient with yourself!

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A Shell of My Former Self

This is the BEST way to describe how my Fibromyalgia and Polyarthralgia having me feeling…..

It was really brought home when out hunting with my hubby and son late yesterday afternoon.  I have a handicap permit so we drive…pull to the side of the dirt road and glass….then proceed.  Yesterday we came to a great spot where the road ended to just step outside of the rig to glass some ridges.

My hubby asked if I thought I could walk about 15 feet from the truck so I could have a better view of one of the ridges….and he and our son went a little ways further to watch a different ridge.

Needless to say….the walk was very slow to get there…then I could only stand for a few minutes…..had to kneel down…..the effort of holding my binoculars was difficult…..I just wanted to be able to glass….to watch the ridge line….

I had to give up within only about 5 – 10 minutes!  My hubby had to help me back to the truck….then I was able to lean on the truck to rest…..attempted to glass a while more…..

So frustrating to deal with HUGE slap of reality!  I am only a shell of my former self!  I used to be able to hike…at least a short ways!  Even with the chronic pain conditions I was dealing with.  Fact is…Fibromyalgia and Polyarthralgia ARE SO radically different!!!

My conditions are still out of control. I am awaiting the appointment with my Rheumatologist to go over all the tests and imaging reports.  I am anxious to see if there are other conditions that are helping to confuse the situation!

My chest and arms are burning….arms, legs, hips, hands, feet, hips and back are hurting/aching SO deeply!  It IS overwhelming…..and the memory issues have not improved at all either…..

Struggling through each day….as so many of you know….is BEYOND exhausting…..it takes everything I have to make it through the day….to attempt to participate….

There is NO easy fix….there is NO magic pill….it IS a long…hard road…..I just keep my eyes fixed on that future day….when I will be able to walk (even a short distance) to sit and glass….with my hubby and son…..enjoying the time in the outdoors….

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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