Embracing life with chronic pain and illnesses.

Posts tagged ‘death of sibling’

Out of the Blue

It strikes without cause

No trigger is known

Yet the tears fall…

The feeling of emptiness 

Of inconsolable loss

No reason…no rhyme…

Overwhelming feelings

Yearnings…missing you…

Desperately trying to fathom

Why this now? 

So random…unable to control

The tears flow…

Is this part of healing?

Of surviving in a world

Void of your physical presence?

The need to hear your voice

To feel your embrace

To hear your laugh…

This path of sorrow

Is steep and treacherous

Wrought with falling rocks

And deep holes…

Navigating is not easy

A challenge for sure

With sorrowful eyes

Prayers raised to Heaven

Seeking comfort

And guidance…

Regarding Functional Medicine

I had originally hoped that Functional Medicine would be an option….that it might provide, not necessarily answers, but some help in reigning in my plethora of symptoms.

Since moving to SE Idaho, I have had the pleasure of making friends with others that are struggling with Fibromyalgia/Chronic Pain Disorder/RA/Lupus/etc. It has been a blessing to have those physical contacts…to be able to exchange experiences…discuss medications, doctors, specialists…

Through these connections I found others that have been to the Functional Medicine Specialist in our area. What I learned from them was disappointing! Each one came away discouraged…the tests done showed nothing…each was told “fix your gut and you will be fine”…and told to take a supplement only available through his office (a supplement that is both expensive and not covered by insurance).

I then reviewed, again, all aspects of the 5-6 hour appointment would cover. The initial visit would include time with the doctor, a psychologist, a nutritionist…

My husband and I both agreed….it would be a waste of money and time. I have all ready met with a nutritionist (thus my Low FODMAP diet)…I have met with a psychiatrist (who said I am doing all the right things…nothing more she could really offer)…I know from the very best GI Specialists/Surgeons that my “gut” has never been normal — has never functioned properly.

I truly hope that others that might be considering Functional Medicine will have a better experience than those within my sphere.

My Dear Sis

Yes…it has been a year since you have been taken from us…to be delivered to our Heavenly Father!

Yet…all still seems strange…

The wind blows

The seasons have

Come and gone…

I need YOU today

Your voice and input…

Wise counsel

Always presented…

Not only to me

But to many…

Confidants are hard to find

Those true that will uphold

ALL secrets….

Every day we miss you

Your presence

Your influence…

I love you

I miss you

My precious Sis!

 

Rise Above

Living in constant, chronic pain

Requires all effort and energy

To get out of bed

To dress and ready for the day

…..to Rise Above the Pain

No plans made

The only thought

To manage…to make it through

To distract or shift focus

…..to Rise Above the Pain

Force myself to rest

To take time to stretch

To shift and shuffle step

From the back to chair

…..to Rise Above the Pain

The beauty of the day

Surrounds and uplifts

The gentle movement of air

From the fan

…..to Rise Above the Pain

The bright ray of sun

Coming through the window

Casting its rays

Across the room

…..to Rise Above the Pain

Bouncing across the floor

Racing toward the wall

Reflecting towards the ceiling

Filling the room with light

…..to Rise Above the Pain

The heart is lifted

The body revolts

The coursing pain

Attempts to overwhelm

…..to Rise Above the Pain

Prayers are answered

A warmth within

An inner strength provided

The welcome assist

…..to Rise Above the Pain

The “Shocking” Side of Fibro

Now home after being gone for about one and a half weeks to visit family in Oregon….my body is very riled up (as expected)…

I had made the decision to take advantage of an opportunity to go to Oregon to visit family. Those with Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/Etc. will attest….this was NOT to be taken lightly!  It was a decision that would absolutely increase my all ready out of control symptoms.

Yet…I know that I cannot miss out on such a valuable opportunity!  An opportunity to enjoy time with family….to have our son enjoy time with cousins…

It is important to make these tough decisions….resting beforehand as much as possible….and resting as best as possible while on the trip….

The hardest part is remembering to be extra patient once back home!  Whether you are like me with a body that is still out of control, or fortunate enough to have symptoms well managed, more than likely you will deal with a flare once home!

I have no idea how long my flare will last….will it be one week…two weeks….longer?  Only time will tell….

I do know that the entire ordeal was worth it!  Cannot live completely isolated in the house until my doctors and I can finally come up with something that will help to at least take the edge off the constant pain!

For now, I get to enjoy those fabulous “electric shock sensations”!  You know the ones that:

• Feel like an electric shock traveling through one’s body, sometimes accompanied by a “falling sensation”;

• Feel 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;

• Feel like “creepy crawlies” or ants crawling under one’s skin and causes the skin to tighten and jerk; and/or

• Feeling of twitching scalp along with facial twitching of mouth, eyes, and eyebrows.

 

Thoughts of You…On Your Birthday

IMG_3265

I had to use this again!  The perfect image as we each celebrate and remember you on this, Your Birthday!!

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11202828_852369534837204_2273386835568988339_o I am reminded of your 30th birthday!  You were SO nervous because I was in charge of the cake! LOL

To your relief, we celebrated with a CareBear cake!  I could think of no other way to help mark such a great event then to play with our nickname for you…along with your favorite CareBears!  LOL

Your nephew and niece treasured the little CareBear figurines that you gave them after blowing out your candles!

Such precious memories!  A moment frozen in time…..

Each of us holds so many beautiful, precious moments!  We continue to laugh…to share…to cry…to uphold each other…..

We are finding strength by sharing….by retelling stories….by looking at pictures….by making sure that we continue to be a part of each others lives….

You have forever joined so many….from different backgrounds….

We continue to feel shock and emptiness….yet also…a sense of peace….that only God can provide…

This is a first for us….your birthday….without you….

This is a painful first…no easy way to say it….IT SUCKS!!!

We will get through this….we will grow….we will become closer….as we draw upon each other’s strength….

And…each of us will be thinking of you….celebrating you….my Dearest Sister, Carrie, in their own way…

Love you….forever…and always!

Shades of Green


The death of my Sis…my Baby Sis…has brought the blessing of color!

I have never experienced color in the world like I do now. 

I have never been experienced the tremendous shades…the vibrant hues!

In losing one so precious….She has shared what is MOST important!

The beauty that surrounds us!

The sights…the sounds…the scents…

Each embrace…each moment spent…

The joy in a child’s eyes…

The laughter…

These are the precious reminders 

That we are alive…

That we embrace those around us…

That we will FOREVER treasure 

Those requested before us…

I desperately miss my Sis…

Yet she presents herself

Each and every day

In the glorious 

Colors that abound!

Reality of Loss

I am learning that living with the loss of my Sis…my Baby Sis…has been the most difficult part of life….

I have experienced horrific pain with many health conditions….I have experienced a nasty, abusive marriage….I have also had the wonderful joy of a loving husband and son…

Losing my sister has been the most difficult experience in my life…

My sister was my best friend…she understood me…we shared so much….I had confided so many secrets in her…

I have no one like her….no one that has heard those dark times….

Yet I can feel her presence….it can come on the breeze….in the sunshine….

I know that there will always be a hole….a vacancy….

The Struggle

Receiving the diagnosis of Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/and-or any other chronic condition is a huge life changing event.  It comes with a wash of initial emotions and questions.

If you are like me, the time leading up to the diagnosis as well as the time that has elapsed since the initial diagnosis have been filled with more tests….more doctors….more specialists….along with more research on your part.

We wear out our keyboards and few working brain cells….to view forums, blogs, medical research sites, etc….all in an attempt to connect with others….which also helps to reinforce the fact that we are not alone!

There are days that we are “in control” of our emotions….by this I mean…that we understand that we have a permanent condition.  For some, its impact is minor/moderate….for others (like me) its impact is extreme….robbing us of all things that we enjoyed and took for granted!

We focus on putting our best “foot” forward….enjoying those few things we can do….like being able to walk to the restroom with a walker….step outside to sit on the porch and enjoy some fresh air….we remember that the milk goes in the frig…or to simply recline and have no muscle spasms.

It is inevitable though…..to have those times when we feel frustrated….overwhelmed…wish that things were like they were before….

Some are able to find relief with medicine…..some with supplements…..some with alternative treatments…..others, like me…..may het be searching for something that will work!  Something that will at least dial down the daily pain/symptoms.

Don’t get me wrong….I am so thankful that my body will tolerate Cymbalta!  (So far the only med……) I am also thankful for the pain specialist that I have seen that stated that simple gentle stretching is the best form of exercise for me right now…this provided a good daily goal for me….something that is usually attainable!

However…knowing that there is really nothing traditional medicine can help….realizing that many of the alternative options are also out….and waiting for another 4 months until the next specialist (Functional Medicine)….and then the additional wait time for all of the tests to come back…..adds another layer of stress!

I am glad there is another option to explore…..yet…there are days that I just wish something would happen….like…maybe I would awake to find that I was just having a bad dream!

Words

Simple thoughts

Vanish in the air

Words to speak

Left unspoken…

Brain is “derailed”

Connections broken

Eyes see

Yet no word

Comes to mind…

Attempt to speak

“What?”

Letters scrambled

Like alphabet soup

You hear again, “What?”…

What had

Been taken for granted

Now sits just

Beyond grasp

Attempt to redirect…

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