Embracing life with chronic pain and illnesses.

Archive for September, 2015

Symptoms in Complete Control (NOT)

Today has been unbelievable!!  My body has been “out of control” for quite some time (with my bout of Fibromyalgia and Polyarthralgia a mere 12 months….the years with all my other internal issues…..just say 15 years of chronic pain)…..

Today though….has sent me reeling!! The intense joint pain….the deep, penetrating aches…..the extreme sensitivity to touch…..knowing there is NO comfortable position to be had….the restlessness of the body….the intense burning that has a mind of its own….

I know this barely scratches the surface….the TRUE reality of what we live with….what we endure on a daily basis. 

It is hard to resist the temptation to give into despair….to allow myself the opportunity to just curl up…close the door….to hide….to cry….

It is at times like these that we can rise…..can overcome!  For it is at that moment when we feel that “pain” is overwhelming us, that we gather our inner strength….we feel the “fight” being ignited within our inner core!

I will NOT give in!  I will yet overcome this!  The trials sent my way will not destroy me….I will continue to CHOOSE to battle on….to look toward a more hopeful (and LESS painful) tomorrow!

For all of us dealing with these mind numbing chronic conditions, I pray for strength and courage….as we each wage our own….very personal battle!

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Those Darn Drug Commercials!

I am writing this for family and friends of loved ones dealing with Fibromyalgia….
Watching TV you would think that Lyrica or Cymbalta is a cure all drug….that it will allow someone suffering from Fibromyalgia to have a “normal” life….
This is simply not true! As my doctors have told me….Lyrica is a last resort drug….the side effects are great. As for Cymbalta….I am grateful for the subtle effect is has on sleep…that is it allows a few hours in my case. 

Yes….I am one of those “unique” complicated cases…so I have a low dose. Any higher would have my internals, including my colostomy, in an uproar!

The same goes for the other med that I take at night…Amitriptyline. I am on a very low dose because this med shuts down (it does NOT slow down) my intestines. 

Amitriptyline has given me a cluster of hours…can be 4-5 of solid sleep. As noted, I cannot do more because my intestinal track is TOTALLY over sensitive!

This makes trying medications for the overwhelming symptoms of Polyarthralgia and Fibromyalgia very frustrating!

The media…or rather…the drug companies would prefer that everyone believe there is a simple pull that can fix our issues! NOT TRUE!!

Those of us suffering with various conditions and illnesses understand. What we deal with on a daily basis is tough….it is the toughest thing that we have to deal with…apart from being a Mother, a Father, a Spouse!

I wish the drug companies were not allowed to promote their products….pills do not solve problems! Medications can be a tool!

Yet…some of us are dealt a hand…..we are entrusted with a diagnosis that does not have an easy answer….

We can only join together….to build each other up….to educate those around us….and pray for a better understanding of our illness/disease.

Life Is Tough!

I SO wish that life was easier!  I enjoyed the past when I could count on all family and friends….we enjoyed teasing each other….laughing as if there were no tomorrow!

Now I know the painful truth…I know the loss of a loved one….the sudden, tragic loss of a precious life! 

My Baby Sis!  She was just starting to experience the prime of life!  A recent graduate of the U of O Law School (first in her class!)….enjoying life with the Love of her life!!!

The future cut short….I cry…..and scream….

Life is SO frustrating!  I so wish my Sis could have her future!  The grand tomorrow with her Law Firm and her Partner! 

I sit here…struggling…dealing with the pain of my reality.  I wish that I could somehow hold a candle to my Baby Sis!  

I struggle with the incapacitating pain of Fibromyalgia, Polyarthralgia, and yet to be determined diagnosis!

I would trade….knowing her impact on all those around her!  I do feel guilt as the big Sis who was supposed to protect.

A horrific overflow of emotions!  I want my Sis! I miss my Sis!  I feel responsible!

Dealing With Loss

Had a very good visit with out Son’s new primary physician. His eyes enlarged as we spoke about the sudden death of his Aunt, and then the move.

A lot of changes….and our kids do not process loss/grief the same as adults. Our kids are not able to express themselves like we can.  It was evident that our Son has been through a MAJOR series of events…..

He lost his Dear Aunt…..moved to another State….left friends and his comfort zone…..

He still does not want to admit that he has dealt with any type of stress! He just smiled and says he is happy!

Yet…I know….and all those close to him know…he is dealing with a LOT!  It is just his childhood perspective that is attempting to protect him. 

Armed with great info from his new doc, I know what to watch for….I will continue to watch our son diligently.  I will offer assistance…have him draw pictures, color, write…or, simply listen to whatever tangent he had to say. 

All this…while I draw upon the strength that I glean from my Baby Sis!  I grasp….I claw….I want to possess strength!  I want to share complete confidence….

It is hard!  This IS truly the hardest challenge!  How do I share strength and courage…..when I am struggling with loss?

ABOUT

Source: ABOUT

Pain

It has been three days since we took our flight to celebrate the life of my Baby Sis with her law firm. Today was my first appointment with my Rheumatologist…..

Yes…you can see where this is going! A LOT of poking and prodding….blood work….X-rays….next Tuesday will be ultrasounds of my hands and feet. 

I am anxious! In a couple of weeks should have a much better idea of what I am up against. 

In the meantime…..OUCH!!!  All symptoms are FLARING….more than usual!! It is so hard to try to relax in my recliner….you know the drill….no comfortable position….aching so deep that I am sick to my stomach. 

Pain is so intense today. I can only hope for tomorrow….and dream of slight relief which will hopefully come.

Don’t get me wrong. I would NOT undo our trip. It was important that I be there…..the look of relief and comfort on her Secretary’s face made it all worth it!  The hugs….sharing….more time spent honoring such a wonderful, special young woman!

I know that I have a long road ahead of me. Yet I can feel my beautiful Sis’s smile….I am finally getting all the medical care that my truly, totally messed up body needs!

The Kindness of Strangers!

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Our son had his first plane ride……went to Portland, OR to join my Sis’ Law Firm (pictured above) in Celebrating her life.  It was important to them that we family members attend.  This of course is awesome!

They celebrated with the slide show our brother had put together….along with some of her favorite foods!  We enjoyed each other’s company….a lot of wonderful stories were shared.

After the busy weekend, my body was, of course, REALLY acting up!  I am SO thankful to the Delta staff who took such good care of us!  Assisting me with my wheelchair….and being so kind and attentive!

We had to switch planes on the way home at Salt Lake City.  My son, who is an incredible help!  (He was taking such good care of me….watching out for me!)  He was kind enough to wheel me as close as possible to the women’s restroom. Then a wonderful, kind stranger offered me her arm!  She just came up beside me as I was attempting to make my way while touching the wall….”May I help you?”  With such a huge smile. So kind!  Then she also helped me get to the sink to wash my hands before allowing me to use her arm to lean on to get back to my chair.

This wonderful lady demonstrated an act of kindness that was (and is) so appreciated!  My energy had been spent on the wonderful time spent with family.

Our trip home was made comfortable by the many kind acts of so many strangers!  Each one assisting with a smile….

I am SO thankful for these many kindnesses!

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