Embracing life with chronic pain and illnesses.

Posts tagged ‘abdominal pain’

My “New” Self

Battling chronic pain conditions like Fibromyalgia, Polyarthralgia, IBS, Pelvic Floor Syndrome, Sciatica, recurring Shingles, Sacroiliac Joint Disfunction, arthritis throughout the lumbar spine area, permanent Colostomy…the list goes on…is VERY difficult.

It tests every ounce of courage, forces us to dig deeper into ourselves. Faith, family and friends are our positive partners. However we can find ourselves alone, divorced and raising our child/children on disability income.

There are times to cry and we must give ourselves permission for that. The emotional, physical and mental control can really take its toll.

We must be patient with ourselves and our new reality. The acceptance of changed bodies due to surgery or surgeries and getting older. When I first had my Colostomy there was no mention of using support belts to prevent hernia, so it was very discouraging to go through a peristomal hernia and its necessary repair. And now the need to layer up with specialized support belt or active support garments is just “a part of life”….essential to my well being.

Let’s face it ladies, we are not sure how to take that big 50! We’ve seen images of older women with their boobs to their bellies. I saw this happen to myself at 51!! It was like they had lowered themselves at least two inches! Ahh!!! Scary!! So I treated myself to some active wear sports bras. Feel better and parts stay where they should without that nasty pulling of a regular bra.

It takes time to adjust to our new living conditions…a new house, change of routine, reviewing and re-examining our budgets. There is time to do this…when our minds are alert and focused.

Thankful for the medical team who have continued to try new out of the box thoughts on my behalf. These have made life easier. Yet reinforce, I am no longer that same person. I have adapted, grown in Faith, now better understand my body and its cycles, know when to ask for help, and embrace every minute of every day.

Living with Grief and Chronic Pain

IMG_4342 This is the beautiful view above Inkom, ID! I

I would SO love to take my sister for a ride in my RAZR to show her this awesome area!  I want to share this with her IN PERSON!  Yet…that is NOT possible!

I know that she is seeing all of this…through my eyes….and as she is watching from above…..

Yet….IT is NOT the same….it is not the same as having her physically present…sitting next to me….laughing and enjoying all the beauty around!

I am just SO thankful to have this opportunity with my husband and son!  I have tools (like my RAZR) that allow me to go out and about with them!  It is the closest to “normal” that I can have right now!  It is my way to get out into the mountains and to share such wonderful moments!  The opportunity to watch mule deer….to watch moose….to see other wildlife prints in the snow….

It is that wonderful opportunity to lose oneself in what is going on around!  That chance to forget about the pain coursing throughout the body……to forget that all doctors and specialists have no answers…..that sharing time and giving of what energy I have to my husband and son….

THAT is what is so important!!!!

In dealing with….working through the death of someone SO special….SO priceless…..my dear, Baby Sis!!!!  I have been dealing with my chronic pain for SO much longer!  My Sis offered SO much strength to me over the years as I have dealt with health issue after issue after issue……

My Sis is not here physically to speak to….to interact with….to hug……

She does hear when I speak to her…and I know that she is watching to see how I deal with this latest health challenge.  I am on the path she wanted….we have relocated, and I am focusing on my health.

I have again stumped the medical community….specialists have told me that I am “beyond their scope of expertise”……no one has answers…….

I now await my opportunity to go to the University of Utah…..there I hope to provide a challenge that will provide answers or assistance to others!!!!  These obstacles that have been thrown in my direction are for a reason!  I know that my Sis would want me to continue to make the most of it and to try to help others!  To prevent someone else from going through all that  have experienced.

It is difficult to express how hard it is to deal with the intense, chronic pain issues I live with day to day….let alone….deal with the time that I need to grieve….to work through the loss of my Baby Sis.

All the while, I am trying to be the best wife and mother possible.

Frustration

My hopes of a new medication that might offer some relief was “dashed on the rocks” today!  There was a hiccup with the new prescription and insurance…so the pharmacy provided a partial “fill”…and had said to come back in a few days when the balance of the supply would be available.

We went to the pharmacy today to pick up the balance of the meds.  The Pharmacist came over and asked me about my allergy/intolerance to Neurontin and Gabapentin.  Long story short…the new medication prescribed by the Neurologist is the “big brother” to Neurontin!!  The Pharmacist and the Lead Pharmacist both strongly advised I not proceed with the medication …..my history is TOO risky!  My entire digestive tract shuts down when on either of those drugs…..no way could I risk that happening again!

So….I left messages for the Neurologist and my Primary Doctor so that all are on the same page.  My husband and I are BOTH very frustrated with the Neurologist…..after all….it is clearly written in my medical records about the intolerances/allergies/reactions to prior attempted medications.  A Neurologist SHOULD have known that the medicine he wanted to prescribe is TOO closely related to Neurontin and Gabapentin for me to attempt it!

So…time now to sit and endure.  My pain level is still WAY up!!!  I have not even begun to recover from the appointment with the Rheumatologist!  All the pushing and pulling to check range of motion!

All Fibromyalgia/Polyarthralgia/Chronic Pain Disorder symptoms are out of control…..it is difficult to type this….but have to get some of these thoughts off my chest!

Info on Grief!

“How Do I Grieve?”: Grief Work and TEARS

Dealing with Grief: 

“How Do I Grieve?”

Grief Work & TEARS

The most common question I hear in my work with the bereaved is, “How do I grieve?”  Though grief is common and all of us will experience it at some point or another, knowing how to deal with grief can be challenging. Many of us fight the emotions of grief, doing whatever it takes to “just be fine again,” even if we’re not. Others of us distract ourselves from our feelings by keeping busy or escaping into activities. And some of us simply ignore the emotions of grief, pretending that everything is “OK”.

So, when someone asks, “How do I grieve?” my counsel is simple: “You have to let yourself grieve.” Usually they reply, “But how do I do that?” And I say, “You just do.”

Grief Work

The “just doing” I am referring to is better known as grief work, or mourning. It is letting oneself go through the emotions and process of grief, for through is the only way out.

One model I find particularly helpful in grief work is Worden’s Four Tasks. This model looks at grief work not as emotions or stages to be experienced but rather, as tasks to be worked through. These tasks are:

1)      To accept the reality of the loss

2)      To experience the pain of grief

3)      To adjust to an environment in which the deceased is missing

4)      To withdraw emotional energy and reinvest it in another relationship

1) Accept the reality of the loss

Accepting the reality of the loss can come instantaneously for some, but for most, will take time. Telling one’s “story” in a safe environment—letting oneself think, talk about, and process what has happened—can help. Sometimes we have to repeat it over and over to ourselves: “They’re really gone”. But it’s letting ourselves feel the emotions of grief that really solidifies our acceptance of what we have lost.

2) Experience the pain of grief

This is the task people seem to have the hardest time with, and the one most are referring to when they ask me, “How do I grieve?” Many of us fear that if we start feeling the intense mix of emotions inside, we may never get back out of them. Yet, this task is at the core of completing all the others. Letting oneself feel pain is not easy and yet, allowing emotions to arise, to express themselves in healthy ways, is at the core of mourning. As I said before, through is the only way out, “…grief requires us to turn inward, to go deep into the wilderness of our soul…. There is usually no quick way out.”[i]

To encourage this turning inward, and facilitate feeling the emotions of grief, I have created a model I call TEARS[ii]This model shows us how to let ourselves experience grief through 5 different options, each of which is equally helpful in our healing.

 

TEARS

Talking:  While it is natural to want to isolate oneself during the intense pain of loss, most will find healing in talking or even just being with family, friends or other support people, sharing the burden of grief and knowing they are not alone.

Exercise:  Physical activity can be a powerful aid in the release of the difficult emotions that accompany loss. Adults and children will find that exercise “allows for a reduction of aggressive feelings, a release of tension and anxiety and a relief of depression”[iii]related to grief.

Artistic expression
For many of us, grief is best expressed creatively—through art, music, dance, and so forth. Tapping our creative outlets allows us to process the emotions of grief in a subconscious way that can be powerful and deep. Creativity is particularly valuable for children who are grieving. Encouraging children to express feelings through drawing pictures, creating a collage of photos and written memories, or other creative activities can be a powerful tool for healing.
 

Recording emotions & experiences:  Creative expression and/or recording one’s emotions & experiences through writing or journaling can help release emotions and free the body and soul of them. When we write the things we have seen, heard and feel, we are better able to gain insight and understanding, for it allows us to capture and revisit our experiences, ensuring we do not miss the important lessons being taught.

Sobbing: The bible tell us, “Be afflicted and mourn and weep”.[iv] There is healing power in allowing our tears to flow for the loss in our lives.  As Washington Irving once said, “There is sacredness in tears. They are not the mark of weakness—but of power. They speak more eloquently than ten thousand tongues. They are messengers of over-whelming grief, of deep contrition, and of unspeakable love.”

3) Adjust to the environment in which the deceased is missing

Using the TEARS method to experience our emotions is key in helping us adjust to the environment in which the deceased is missing. Adjustment takes time and comes as we continually work through the grief emotions that arise. Eventually, we find that we can talk about the deceased and fondly remember them as we engage in new life routines and experiences. Adjusting involves allowing ourselves to adjust, learning to let go, and being willing to move on when we feel ready.

4) Withdraw emotional energy and reinvest it in another relationship

Eventually, we will feel ready to reinvest in other relationships. This doesn’t mean we are “replacing” our loved one; rather, it might mean becoming closer to our living family members, bonding in new ways with old friends or making new friends, or creating new intimate relationships that help us feel healthy and healed. We begin to see that life continues after loss, and hopefully we choose to invest in our new life and relationships even while we carry those we have lost in our hearts.

Dealing with Grief Takes Time

It may take months or even years to get to the place where these tasks feel complete, but that’s just the way grief works. My advice is that we continually remind ourselves, “As long as I am working on my grief, the grief work is working”.

Give yourself time, space, and all the love you can muster to nurture yourself through the work of grief. It’s a challenge, to be sure, but when you really get in there and do the work, it will eventually become easier. One moment at a time. One tear. One smile. One foot in front of the other. And then, one day, we somehow know we are healed.

Thoughts…

IMG_4077

I see the signs of Autumn all around…..sitting in my chair the leaves have turned a deep yellow….and find themselves whisked around by the wind.

We are in a new area….looking forward to the sights that each of the Season’s will bring….

The crisp cold air….is refreshing….occasional covering of clouds high above….

There is SO much life in the high desert area in which we live in Southeastern Idaho!  It is vast….it is beautiful!

This new adventure is a great distraction to the day to day pain that dictates my every moment…..

Chronic Pain Disorder

Welcome to my newest condition that was added by the Neurologist!

He could give me no firm answers….there is very little understood about this conditions/disorders that involve chronic pain.  Fibromyalgia and Polyarthralgia are in this classification.  As he described, it is a malfunction in the brain….where ALL input is “read” as pain….thus the nasty pain….everywhere……

I am to start a new medication in addition to my current med…..a mixup at the pharmacy has resulted in a delay….so Monday will have to call the Neurologist’s office so they can get it taken care of…..hoping by Tuesday to start introducing the new med.

The plan?  Slowly ramp up on the new medication at night….while continuing with my morning med…..and try to continue to move/light exercise as I am able……

My “light exercise” you ask?  It can be as simple as walking from the living room to the restroom….or if able walk from the man door of the garage to the front door….baby steps!  With a lot of rest as well!!!

He was very honest….there is no cure.  The goal is to get the pain to a “manageable” level that will let me do the basics of living…it will be a very long and slow process.

I am also to see a counselor that is familiar with chronic pain issues….to further help me…..(will be interesting to see if there is more that he/she can add to my arsenal!!!).

Patience!

One of the most important things for those of us with chronic pain/illness, is to remember “Patience”!  Yes….I know….often easier said than done!

We must have patience with ourselves….with the health battle we are fighting….we must have patience for those around us….since our mental and emotional energy is usually maxed out due to our own internal struggle of dealing with just managing (or rather…negotiating) our day!

A great example for me was this morning!  I had a powerful idea to write about….something I knew would help me as well as others to get out….to express……yet…..as soon as I got home….I could not remember!  To have such a strong pull to write on a specific topic….have no way to make a note so that I could refer to it…..to intentionally repeat it to myself….a number of times…..then promptly forget as soon as I got home!

Well….at this point….I just had to smile…..and shrug!  After all……it would do no good to get frustrated or angry…..I know that if I cannot make notes for myself or have my hubby or son help act as my “memory”…….there is a very good chance I will not remember.

I know this is part of my chronic condition……the wonderful “Fibro fog” as it is called…..magnified by the grief that I am still working through.

So as a good friend of mine who has Fibromyalgia suggested…..use notes….whether they be sticky pads….or on the phone…..whatever works!  Write down the simplest thoughts!  These have been a great tool and reference…

It has also gone a long way toward teaching me patience!  Maybe this is one of the lessons that I was intended to learn! : )

Day To Day

It is hard to explain the day to day of someone dealing with chronic pain/chronic illness.  No one understands…..these chronic conditions are always present…..they do not go away….there is nothing we can do to improve our day to day……

My Fibromyalgia/Polyarthralgia is STILL trying to dictate my life!  Today….it was amassing an amazing attack!  I could feel my body from head to foot…..my hands were cramping…..my legs and arms were spasming!  My feet hurt SO bad I could barely put pressure on them to walk!

SO frustrating!  It has not always been this way!  Yet this is how Fibro/Poly wants to show its control!!!!

I have been reading….and am anxious to learn more from the specialists that I see this week.  I am NOT willing to step aside….I am not willing to yield to this pain that is overwhelming me……

Somehow this HUGE struggle that I am enduring will be a benefit for someone……I do not know how or when….I just hope that someone….somewhere….will NOT have to go through this horrific ordeal!

I just cannot find the words to express the physical pain….the emotional tole…..that these chronic illness take.

The “normal” person has NO idea!  I guess….to those that have never experienced chronic pain/illness…..I can only say….close your eyes…..

“Yes…relax…..now envision your entire body aching…..throbbing…….imagine someone sticking icepicks all over your body in random places……

now….feel a massive burning sensation……can be your right or left side…..just imagine…fire engulfing your body……and someone sticking icepicks in your body…….

now add an intense heaviness…..that feeling of when you are asleep and dreaming…..a nightmare….from which your body will not awake……..

let’s add a knife stabbing….cutting through your calf…….now your hip….”

You….the “normal” STILL do not have a clue as to the day-to-day struggle that those of us with chronic pain/illness deal with on a daily basis!

The difference?!?!?!  YOU would never know!

WHY???  Because we smile….we do our best to go through our day to day “musts”…..we do the best we can for our families…..we give ALL we have!!!!  We give it ALL to those that are closest to us….our spouses…our children….

The HORRIFIC battles we wage EVERY day are battled INSIDE!!!!

On the OUTSIDE we appear “normal”….yet….in reality…….WE are ANYTHING BUT!!!

To those….like me….battling…..HANG IN THERE!!!!  WE WILL make it!  We WILL see a better tomorrow!  Even if that tomorrow is a month….a year….a decade from now!

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….

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!

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