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First Adjustment (Pain Pump)

At my first follow up appointment on Thursday, it was very difficult to know how much (percentage wise) the pain pump was working vs the pain medication vs the complete rest. I could tell that there was a change in my symptoms…for example, the intense stabbing in my upper back was gone replaced by dull ache.

Our conditions are hard to articulate…the fact that our symptoms (read this as types of pain being experienced — stabbing, dull, throbbing, ice pick, aching) are not the same from day to day! Just as soon as you being to expect the intense stabbing in your feet, your feet will ache instead and the stabbing has moved to your chest…not to mention all the other pain sensations all over your body.

By Friday night it was clear that the slight reduction in oral medication and the slightly more than conservative increase of the medication from the pain pump was not enough!

I have an appointment set for this coming Thursday morning…however, I will be calling my pain specialist Monday morning to let him know that we need to turn the pump up…much more aggressively!

This is to be expected! It is going to take time to get the pain pump dialed in to fully be able to do its job.  I do NOT expect to be pain free…I am just hoping we can get my pain level to a 6 or 7!

I am glad that I will be able to provide my doctor with more specific information in regards to how I am doing at the current levels…and, most importantly, I know that this is temporary! We will work through this!

It’s Okay!

I awake in the early hours

To the throbbing and stabbing

Coursing through my body

I take leave to crawl into a hot bath

…It’s Okay!

As we watch a favorite program

Sleep overtakes me

Unable to keep eyes open

I have no strength to fight

…It’s Okay!

Plans are made

To spend time with friends

Nap taken and extra rest

Do not prevent a flare

…It’s Okay!

Apologies sent

No need for self doubt

There will be other chances

Our family and friends understand

…It’s Okay!

Hidden conditions are in control

Our bodies dictate actions

We are forced to be patient

To live within the invisible boundaries

…It’s Okay!

There are times we cry

We battle with frustration

We struggle with isolation

We wrestle with guilt

…It’s Okay!

We cry out to God

For His peace and comfort

We hold tightly onto our Faith

Knowing our path is fraught with boulders

…It’s Okay!

We deal with thick brain fog

With vision that can blur

Often unable to remember

Or use incorrect words

…It’s Okay!

 

The Secret Within

The internal struggle

Forever raging within

The only thing for certain

Is the ever present pain…

Appearances are deceivingsun-beach-st-peter-obi-baltic-sea-163867

Just as a smile hides the truth

The outer shell is a disguise

Causing questioning glances…

The mirror betrays

Reinforcing a false narrative

And reinforcing the changes

A reminder of all that is lost…

Guided by our self knowledge

We do our bestTo follow the narrow path

Strewn with boulders and potholes…

No amount of care

Prevents the impacts upon us

The frustration our family and friends endure

Hurting those most close to us…

Our hidden conditions and illnesses

Attempt to rob us of all

Destroy our finances

Replace what is taken with isolation…

We utilize the tools we have

Each carrying his own set

Medication, exercise, meditation just a few

Combined with family and friend support…

We are united to others

Similar paths shared

A brave front we will show

As we fight an unseen enemy…

 

 

Two Steps Backward

2017 has proven to be a rough year so far!  The arctic front that came through almost two months ago wreaked havoc on me resulting in a nasty flare.  Then with the change of insurance, there were challenges with getting Cymbalta approved…leaving me with the experience of going cold turkey…two weeks of intense withdrawal symptoms on top of the Fibromyalgia symptoms.  This followed by a severe bladder infection.

I did have a bright spot! Insurance had said yes to the pain pump…so I was looking forward to a pain pump trial at the end of this week. That is, until this morning.

I received a call from my pain specialist’s office….expecting it to be the final instructions prior to the trial.  Unfortunately, I was to receive the news that insurance had approved the pain pump….but they denied the medication. What?!?!?!?  Yes…the medication was denied.

My specialist’s office is approaching different manufacturers to attempt to find assistance for me so that we could go forward with the trial….after all, you have to be able to get the medication in order for the pain pump to be useful! LOL

Needless to say, it was another sinking moment. That too familiar, wind out of the sails feeling…it really does seem that for each step forward I am taking two steps backward.

My faith is strong. I know that if I am meant to have this opportunity the pieces will eventually fall into place! For the time being, I will appreciate the medications that I am able to take.

Discouragement

It is inevitable during our battle with chronic pain that we face discouragement. After all, we are battling on so many fronts!

We find ourselves struggling with the guilt that our longterm illness/conditions cause…as we watch our finances depleted and debts grow…knowing that we are helpless to do anything about it!

You may be fighting for social security disability like I am…finding that each time we get close to scheduling a hearing…that the “backlog” has pushed our case out yet another two to four months…

Add another layer.. .that with insurance changes that placed me into forced withdrawal as I awaited my prescription to be approved…

I could go on and on…the important point is to understand that we we will have ups and downs…no matter how positive we try to be.  Remember that our projecting a positive front wears on us as well! Our limited “spoons” are often used before we can get out of our bedroom in the morning!

Allow yourself a time out…a day to sleep…a day to watch your favorite movies…the time will help you to “reset”. Our struggles will still be there but our spirit will have been strengthened.

Our Best…

We all strive to do our best…to put our best face forward…to project an image of strength…yet, inevitably, we will have those low points. I like to visualize these as “bumps” in the road…

A few days ago, I was dealing with one of those low points. The overwhelming pain, fighting with insurance for the much needed medication change, dealing with my advocate regarding the Social Security Disability….not to mention the financial pressure…add in an even more severe headache than “usual”…and it did drag me down!

At times it just feels that I have no control over anything anymore!  Yet…this is NOT true!  I ALWAYS have control over my attitude…how I am going to view the world around me. Believe me…this was not a quick turn around…it took nearly half a day for me to be able to refocus my mind.

As difficult as it can be to maintain a positive attitude, I find myself blessed whenever I do choose that positive road rather than the negative road.  No…it does not make the pain or symptoms go away…it does not diminish them…what it does is even more important…it strengthens my mental resolve!  It helps to recharge my desire to view my life as a glass that is half full!

Our lives are further complicated due to our combinations of conditions/illnesses…however, those same conditions/illnesses do not have to dictate how we view ourselves or the world around us.

Darkness

From seemingly nowhere

The long dark tentacles

Reach out to encircle…

The ever growing darkness

Threatens to completely envelope

To block out any light…

With gnarled fingers

It scrapes its way

To cover all within sight…

It brings its partners

Despair and depression

To further set its trap…

It yearns to take hope

To strip away peace

To destroy our Faith…

As with the darkest night

It can be fought

With a thin frail light…

A simple small flame

As that dancing on a candle

Can pierce its grasp…

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