Embracing life with chronic pain and illnesses.

Posts tagged ‘families’

Further Insight

I gained further insight this morning! A breakthrough for me. I am finally realizing that I am struggling with being unproductive!

Before my chronic conditions forced my departure from the workforce, I was the primary income for our family.  My husband’s attempts to find employment were met with odd jobs here and there while trying to grow his fish taxidermist business.

I was working full-time, teaching 4/5 grade at our Parish, and assisting with the Altar Servers.  All of which I gradually had to let go…until I just had to disappear from them all!  I could not even attend Mass!  Sitting quietly would increase my pain level so much that I would have to lie on the couch the rest of the day!

We have moved which has helped the stress. Our son is thriving in his new school.  My husband has job opportunities.  My health has not yet improved. I know that my conditions are extreme at this point in time. I realize it will take years for my body to settle enough that I can form what will be my new life pattern.

I now understand that I had mentally come to terms with this, yet I had not done so emotionally!  Just as I am still grasping the reality of life without my Baby Sis!

This emotional toll is what I am feeling now….it is as if I am now comfortable enough in our new place to allow my guard down. Enough that my emotions are attempting to show their head.

This places me into an internal struggle! My “inner self” is now trying to protect me. This is the reason that my sleep has been so negatively impacted these past 4 days!

Once I realized what was happening, I paused to thank my “inner self” for the protection. And reminded myself of the wonderful, safe place we are in now. The positive impact it is having on us all!

Now I must attend to those feelings of negativity! That of feeling unproductive, of feeling useless. Writing this is all ready helping! It is lifting the heavy weight that I had felt.

I know that this is temporary….even if it lasts a period of time….say 2 – 3 years. I am doing all I can in the mean time….as I Blog, share my feelings, sit with my son as he does his homework, text/email those close to us, place calls when I feel well enough, say prayers (many times) daily….remind our son of his Faith of the Church and the wonderful meaning of Mass.

I will be able to attend Mass in the future….I will be able to offer some form of service….for now though….I understand that I must allow myself to recover as best I can.

For now I must embrace the emotional side of my chronic conditions!  Just as I am embracing the emotional side of life with my Sister’s physical absence.

A Son’s Disbelief

Our 11-year-old son gives me hugs which I love of course! However, last night while sitting in the office with him as he was doing his homework he said something that completely took me aback.

Since I cannot sit very long, I usually spend some time lying on my back on the floor….or fidget around….shifting my arms and legs. I must have made a slight sound as my son turned to me and asked if I was okay. I said I was fine. He promptly responded, “No you are not!”

I reassured him that even though I was not feeling very good, that there would come a day that my pain level would be better….that I would have better days. To this? His response was “Will that REALLY happen, Mom?”

I again told him that it would. That it might be one, two or more years down the road…but that day would come.

He still did not seem to completely believe but was satisfied with my answer. After another huge hug, he returned to his homework.

This is the “kick in the gut” that I as a parent with a combination of chronic conditions must “deal” with. I know that I am not alone. Each of us had had this moment with our kid(s)!

It is the added responsibility…the extra push that forces us to feign a smile…no matter how we are feeling! Even when our kid(s) can see through the charade!

Pain = Nausea

Well…not ALL the time!  Just some times….yet when it hits….it really sucks!!!!!

As if dealing with chronic pain (Fibromyalgia, Polyarthralgia, Chronic Pain Disorder) is not enough……there are those days….like today….when my IBS is caused to flare….tying my stomach in knots….feeling so nauseous that all I could do was lie in bed….and hope it would pass soon!

The intensity subsided within 3-4 hours…however, that nauseous feeling is still present…..now accompanied by the Electric Shocks….not to mention the fact that I cannot get warm!  LOL

I know this will pass….these symptoms will morph into my more usual and customary “companions”……..

Just know that the nasty sick feeling in your stomach is NOT in your head…..it is a direct result of your system being overloaded with the pain signals that it is interpreting…..at times it just becomes so overwhelming that your entire system will give in……thus the title…..Pain = Nausea…..

Mind Set!

When dealing with Chronic Pain or Chronic Illness…we must first start at the beginning! Is our mind set on “dealing” or rather working “through” our current health challenge????

If we answer anything other than “working through”, you are need of additional help!  As difficult as it may seem….if you feel that you are “battling”….”struggling”….then I know you will benefit from working with a therapist!

There is NOTHING wrong with YOU!  IT is the space you find yourself in!  

During our “struggle” there are times that receiving assistance from others…like  Counselors or Psychiatrists, provide a HUGE benefit to our mental and physical health!

The point that I want to reinforce is what I heard from the Psychiatrist I saw today……

If I use the word “battle”….I am fighting…..

If I use the word “working through”…..then I am embracing my experience….that I am taking ownership and “working” through the emotions involved to move through the experience….

Do NOT take me wrong!  I am not for a second taking any minute or SECOND of this struggle for granted!!

The difference is truly…your mind set!  Are you “fighting” what is happening in your life?  Or…are you “taking in”…and trying to “place”….to “SEE” how what is front of you….might fit?????

THIS IS the hardest path!  HOW to “see” the path in front of us…….

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!!!

Feelings of Failure

It is one of those days!  A conflict with my hubby has sent me spiraling….feelings of complete failure as a wife and mother have overtaken me…..

Overly sensitive?  Yes….because my body is overwhelmed…..I am all ready mentally on edge with so much energy being used to attempt (unsuccessfully) to ignore the pain and spams that have been wracking my body.

I know that EVERYONE who is or has dealt with chronic pain or chronic illness understands this…..the slightest hiccup can have an enormous effect!!  We then grapple with ourselves internally……utilizing the last bit of energy we can muster…..to get our “minds” back on track!

Afterall….I know that I am a good wife and mother!  I just do not “feel” that I am at this moment….or rather this morning…..it will pass….

This is part of that negative self talk that I had vowed I would NOT do!  LOL  See???  It is the course of life…..just as with our conditions……each day is wrought with challenges……

More challenges than those without a chronic condition could ever imagine……

It is times like this that I MISS my Sis….SO MUCH!  I could turn these feelings around so quickly just by calling her or texting with her to find out about her day….or her and her boyfriend’s latest outing……the perfect distraction to “derail” my internal struggle….

I know the feeling will pass…..I will get through this…..all will be well…..

Now….I am exhausted….the emotions involved in writing this…..use the last of my energy……time to curl up on the couch for a much needed nap!

I know then I will awake refreshed (at least a bit recharged mentally)!  I will once again regain the strength to continue my health battle….

Broken Rule of Grief!

I found a great book that dealt exclusively with the death of a sibling….”Surviving the Death of a Sibling” by T.J. Wray.

I would highly recommend to everyone in this position who has lost a sibling either through disease or sudden tragedy.  For me, it reassured me that I was not losing my mind….that my reactions are normal….stages and steps in the grief process.

However, there are a few things that the Author suggests that are good (like exercise…..not making any major changes for at least one year….), that make someone like me, who is suffering with extremely debilitating pain, just smile.  (Okay…at first I did roll my eyes!)  Just remember…the book is directed to the average healthy individual.

I did have to smile and laugh when I read about how all grief counselors agree that no major change or decision should be made for one year.  LOL

As you know if you have been reading my blogs, within two months of my sister’s tragic, sudden death, I quit my job (my health having taken a HUGE dive and her death magnifying all of my symptoms); AND, we moved…..not just to a new house “down the street” but to an entirely different State and climate.

Breaking this “primary rule” of grief has been good for me and my family.  The death of my sister woke me up!  My sister’s zeal for life…..her ability to be outgoing yet circumspective…..qualities that I have always so admired….INSPIRED me….provided the STRENGTH for me to finally step up and put my needs first.

Yes….this was completely against my being….yet….by quitting my job and relocating…..I am now in a better place for the medical care that I need….as well as giving me the opportunity to rest…..to give my body the chance it needs to improve.

The “Truth” of Fibro

I have found that Fibromyalgia wants to confirm to all that it is in control!  Control of every ache and pain throughout the body!  Yet…that is not enough!  It also wants to attack the energy….the memory of those in its path!

Yes! Fibromyalgia is not only a condition that attacks the muscles….but the energy and the memory of its assalent!  

We do not ask to be its victim!  I…nor you..asked to be its victim!  Yet….we were selected to be……to become part of this Fibro family!

I guess…just as in any family…..the individual truly never chooses!  Afterall….we do not choose our Mother or Father!  We are “born” into a family……we then grow and develop from that…….

Fibro is like that!  I did not “choose” to have Fibro!  Yet….I am now in the “Fibro Family”!

Fibro attacks our muscles…..our strength….our memory……..it causes us to experience extreme fatigue!  What we share is the feeling of being “abnormal”….of feeling “completely lost”!

We are “trapped” within our bodies…..left to feel that we are “crazy”…..that we are “alone”…….

This is far from the truth! WE are many!  

We are from every race…..from every sect…..from every creed!  We KNOW Fibro does not care what Color, Race, Creed or Sex!

WE will UNITE to fight this illness….this syndrome….this condition!



My Sis!  Wow do I miss you!

My son picked the perfect stuffed animal to be placed with you!  The most adorable teddy bear with a necklace with little dogs on it! Like my son said, “that is Lucky”!  My Sister’s dog was on the necklace!  There was no better way to say….Goodbye!

She was such a wonderful, awesome Sister, Daughter, Aunt, Girlfriend, Friend!  

It is hard that is for sure!  I wish I could bring her back!  I wish that she could be with us!  i know that we have no choice!  

Our hopes and dreams are not what God dictates!  His decision is the ultimate….the one that decides all.  I must say that I only see my own piece!  I see only a sliver!  i have no idea about the “entire” picture…..the full complete picture!

I can only close my eyes….relax….and let God take over!  

The pain…the loss of my Sis is SO intense!  Yet….somehow I know that all of this horrible MESS will work out for the best of all of us!  As hard as that is to believe!

All I can say is that I feel my Sis….I can feel her hand….guiding.  There are certain things that I must help with…..friends that I must assist….to find closure!  To see that it is “okay” to let go!

“In letting “go” we do not lose the wonderful, graceful, and loving person…..we so care for!  It is that moment that we are able to inhale!   To know that our Beloved will always be with us!  Will alwayw be present!  Is ever watching over us!

Thank you, Sis!  You have expanded our family!  You have opened me to accept and love many more than I thought possible!  

It is because of you that I am able to open myself!  To feel….to allow myself to be touched!  

Thank you!  My Dearest, CareBear!  I love you!

Dealing with a Setback

As you know, I am struggling with my Fibromyalgia and Polyarthralgia.  I am working the 5 hour days at work and taking the extra time to rest or have the chance for down time before I need to take care of dinner or other things for my family.

I was attempting to ramp up the Gabapentin that my doctor had hoped would help with the pain.  However, I was noticing that I was having to take more of the Milk of Magnesia on a daily basis.  Sidenote: If you haven’t read other blogs, I have a permanent colostomy due to internal issues that my specialists have not ever seen.  So, needless to say, my body responded to the Gabapentin by stopping my intestines!  No output….or having any type of build-up…..is an ostamates nightmare!  The pressure….the bloating….the concerns about another peristomal hernia (due to the weakness all ready present in the abdominal wall)!  Yikes!

It truly sucks to have output from the stoma ONLY work when it is in a fluid form!  My entire body hurt…..burned….ached…..then I had to add the horrible sick feeling due to things not passing as they should!  It was a miserable weekend!

Monday I called my specialist who is very familiar with my colostomy and the way I have been “rewired”.  He was out of the office, but I was able to speak with his nurse.  Her immediate response “get off the Gabapentin ASAP!  Call your doctor now!”  After a brief discussion, I did just that.  I left a message for my doctor relaying the instructions from my specialist’s office.

I am scaling back and will be off the Gabapentin soon.  I will then have to spend at least 5 days to allow my body to relax…..to try to normalize without the aid of the Milk of Magnesia.  My doctor and I will have to determine the next best step.  

I am continuing with my other med….the Cymbalta.  It is at a pretty low dose….however, it allows me to sleep!  Even though it does nothing for pain…the sleep is good!  

I am struggling through the nasty pain….the burning…the daggers…the overwhelming sensations!

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