Embracing life with chronic pain and illnesses.

Posts tagged ‘Catholic family’

Loss and Chronic Pain

Dealing with chronic pain is difficult…..dealing with the loss of someone so close is hard…..

It is hard to find words to describe the quagmire that I am in now. I I have pushed through….and been living with chronic illness and chronic pain for so long!

My Sis, Carrie, was such a huge support! She was always there for me! She was always my rock!

My chronic pain disorder, polyarthralgia and fibromyalgia are still providing huge challenges….as previously stated….no one I have seen yet can offer any true options……

I do not expect answers…..I have had TOO many situations in which I have been the “unique”….the “one in a million” case….or as my Sis would say…..”you are SO special”!!!!

I just hope to have some semblance of “normalcy” or control….just enough to have the opportunity to walk with my husband and son…..

I do NOT expect to be able to run again (although I am not willing to give up that dream)!

Yet…I am wrestling with the pain…the gut wrenching loss of no long having my Baby Sis……being the one that was supposed to always be there and protect her…..

The twisted paths we weave! My Sis was enjoying the best part of her life! She was happy and making a difference! She touched MORE lives than most! Of that I am SO proud!!!

I guess I am just trying to say…that LIFE is HARD! God opens doors…and provides paths for us to walk…..it is then up to us to go through those doors and to walk…..to persevere….to NOT lose our faith! It is our unique challenge to move forward….to keep taking one step after another….

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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.

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Another Symptom of Fibromyaglia

I thought I had experienced the gamut of symptoms that Fibromyalgia and Polyarthralgia could throw at me!  It has proven me wrong!!!!

For the past couple of days, I have had the strangest sensations!  Like little electric shocks followed by a feeling of being completely unbalanced.

So…being the inquisitive type like I am…I began reading through as many of the University reports possible regarding these odd prickly/electric like ripples……

I found the following:

“The feelings and caused causes of fibromyalgia electric shock sensations can be described as follows:

Sensations

Feels like an electric shock traveling through one’s body, sometimes accompanied by a “falling sensation”.
Feels like pins and needles but more painful, alarming and pulsating.
Jerks the joints of arms, legs, fingers and toes
Can come on at any time and is like a flash of light followed by electric shock tingling.
Feels like “creepy crawlies” or ants crawling under one’s skin and causes the skin to tighten and jerk.
Feelings of twitching scalp along with facial twitching of mouth, eyes, and eyebrows.”

In further reading, I find that this “Fibromyalgia Electric Shock Sensation” can happen anytime, anywhere, intermittently…..that it can last for days, weeks or sometimes months!

Yikes!  It is SO bizarre!  Like a current that is rushing, randomly through the body…..and that “falling sensation” is scary!

I am thankful that I have undergone so many tests in the recent months to know that my “body” checks out as “normal”….I am thankful that this is just one more symptom of my condition!  (No…it does not take the scariness away….it just helps me to provide some positive self talk as I deal with this craziness!)

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Faced with Reality!

YES!  I am dealing with reality head on!  I had SO hoped that one of the typical or “traditional” methods would treat my Fibromyalgia/Polyarthralgia!

Yet…due to my underlying internal disorders (spastic colon, spastic anus, IBS, oversensitivity to ANYTHING involving my gastro-intestinal tract)….I am apprehensive…concerned about the outcome….

I am the 1 in 1,000,000!  I am the one that does not fit ANY scenario!!!!

My Sis would be proud!  I do NOT give in!  I embrace the fact that I break the mold….each and every time!

My hope is that it will finally lead to some answers….some hope for OTHERS like me!  I cannot be alone!  I cannot be the only one!  There must be others that are struggling…that have educated themselves….have been through the frustration of their doctors and/or specialists NOT knowing the answer!

I CANNOT be alone!

Yet…I am MORE than willing to be a spokesperson for those of us that are living like I am….

Struggling to truly understand what is going on inside….wanting to maintain some sort of semblance….to have some opportunity to interact with our significant others and children!

For me????  I am know faced with the FACT that I KNOW more about my condition then the specialists who have been trying to help me!  It is TRULY a role reversal!  I, the patient, know more than the surgeon/specialist who is helping me!  I have met this before….in a WONDERFULLY gifted specialist, Dr. Bascom!  (IF any of you are having issues contact him!!!  (He works out of RiverBend in Springfield, Oregon)….I say this from experience…this wonderful GI specialist had tears in his eyes when he spoke honestly to me!!!!

I am now far beyond even he could have ever considered!  The “onion” that he helped to start pealing has now morphed….I cannot find anyone who is able to understand my condition…..

My Fibromyalgia/Polyarthralgia is further complicated by the OVERLY sensitive GI tract that I have!  I cannot handle Amitriptyline, Gabapentin, Prednisone….these drugs COMPLETELY shut down my GI tract!  (We are NOT talking about becoming constipated….we are talking about the GI tract…SHUTTING DOWN!!!)  This means that the intestinal tract completely shuts down!!!!  MAJOR problem!!!!

This is TRULY abnormal…the medical field does not understand this reaction.  Believe me!  My specialists were completely take by surprise!  They assumed that a a “slight” variance from the main drug would NOT produce the SAME or WORSE reaction!

Well…I took Lyrica for 2 days….by the 2nd day…I was on the floor…in so much MORE pain that I could do nothing…..I was curled in a ball….on my right side….my husband found me…..

Thankfully….on that day we went to the pharmacist to have my prescription filled.  They said “NO WAY”!!!!  This drug is a big brother to Gabapentin!  “Just a brief exposure will cause your system to shut down!”….

YES….my pharmacist was right!!!!  My Spastic Colon, Spastic Sphincter, Colostomy, IBS history made me an UNIQUE case!  I could not take ANY of the medications that my Neurologist would prescribe for Fibromyalgia or Chronic Pain Disorder!!!

Somehow…this horrific ordeal that I am dealing with…..will provide HOPE to others!!!!

Just know…YOU are NOT alone!!!!

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Living With Chronic Pain

Living with Chronic Pain is SO hard to describe!  When I went into the Neurologist last Thursday, I was asked the typical “What number best describes your pain?”  I responded “50”……the nurse asked again….”What number on a scale of 1 – 10 best describes your pain?”……I again responded “50”…..

Those with a Chronic Pain and/or Condition understand my answer…..I was hurting BEYOND my normal everyday pain (which is always above 10)……the only way I could describe it was to answer with an absurd number!  After all….that ridiculous pain scale was NOT made for those of us with a chronic condition!

IF it WAS made for us…..the doctor’s would use a different scale for us….and us alone! OR better yet!?!?!  They wouldn’t bother to ask us such a ridiculous question!  I mean…..after all….we ARE hurting BADLY!  Beyond what they could EVER imagine!

I am NOT downplaying those important people in our lives…..our doctors, nurses, specialists……or our loved ones, friends, coworkers (if able to work)……

The point is….ONLY those WITH Chronic Pain truly understand Chronic Pain…..those closest to us (our immediate family that lives with us on a day-to-day basis) runs a close second!  THEY have learned those secret grimaces…groans…or movements that we use to hide our pain.

We have become MASTER magicians….or rather MASTERS of illusion!  We have learned to disguise…..to hide how we are really feeling.  We know that no-one truly understands what we are going through….it is truly “One MUST walk in my shoes” to understand.

For those close to the individual living with Chronic Pain and/or Condition…….be patient!  Understand that plans must sometimes change….that rest breaks are needed…..just let US dictate the pace…..and accept us…..as we are….

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Thoughts…

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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…..

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True Thoughts of Loss

What are the “True Thoughts of Loss”?  Really???  It TOTALLY SUCKS!

Truly!  The loss of someone so close….especially in such a sudden tragic way is VERY hard…..

Even with Faith…with belief in a higher power….realizing that God IS God….

It is STILL difficult!  It is just Faith that helps….it gives the strength to know that there IS some greater good…..a good that is BIGGER than we are….that is outside of us….that we cannot see….

We cannot see this BIGGER good because we are TOO close!  We are TOO close to the origin!

I guess that is the TRUE secret!

The knowledge and the true HOPE that our BELOVED has somehow bridged the gap…has SOMEHOW impacted lives in such a way….that even in his/her death….the result is a GREATER impact on ALL those around him/her!

In my case….I have had the TRUE pleasure….the TRUE blessing….of seeing FIRST HAND the HUGE impact that my Sister had on the lives on those around her!

My Sis….is a TRUE living testament to a LIVING…BREATHING…God…..

Thank you Lord for holding my Sis Close!!!

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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!

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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….

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Outdoors!

We are outdoor enthusiasts….we love to fish and to hunt…..I really enjoy both! We also enjoy taking time to just go out and shoot our guns. With my health issues and surgeries, I have been on the sidelines….my husband and son have been able to enjoy shooting….shooting clay pigeons and rabbits….along with just target practice.

I have been anxiously awaiting the day that I could join them. And…today was the day! It was my first chance to shoot clay rabbits and pigeons……it was AWESOME!!!! I was able to hit quite a few clay rabbits…..and even got a few of the clay pigeons! This was my first experience with the clay thrower my hubby and son have been using.

It was fantastic! Just cannot begin to describe how invigorated…..how energized I was after spending that time today. WOW! I am really looking forward to hunting season this year! I will be able to get out….to walk and navigate without the constant pain.

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