As the snow deepens
The silence grows
As if time is standing still…
My mind is refreshed
As this quiet seeps to my core
Banishing all doubts and fears…
The clanging in my body
Fights the stillness found within
I close my eyes to return to the calm…
The falling snow builds
My mind again quiets
The screaming in my body subsides…
Such a blessing is granted
To reaffirm Faith that is tested
My soul is stirred…
© Stacey deSoto — 2018
Here’s to all of you with chronic illnesses and conditions! During this latest flare (Fibromyalgia, Polyarthralgia, Piriformis Syndrome, IBS-C) plus additional infections (bacterial vaginosis and yeast infection), I looked at myself in the mirror and simply said:
“I am going to make sick look good!”
My chronic conditions have taken enough! I will embrace my “new” fragile self and continue to thank God every day for his strength and courage to allow Him to be seen through my weaknesses.
It feels like an eternity since I have written a health update!
Again, I must express my gratitude for my pain pump! It is the reason that my Pain Specialist has been able to determine that I have Sciatica (both left and right side)…. Sacroiliac (right side)…and now Piriformis Syndrome.
A week from Monday, I will receive another injection to calm the Piriformis. We are working towards improved function of my right leg. I am sure many of you have dealt with the Sciatic nerve(s) acting up: burning, numbness, tingling, throbbing, stabbing, muscle spasms, etc. My right leg from buttock to the tip of my big toe has been experiencing these symptoms along with being unresponsive at times –foot will drag or leg will not move when I tell it to.
The issues with my right leg have been a big problem for years now. I had come to accept this as just one more thing to learn to live with…yet now more layers to my medical conditions have been uncovered. There should actually be improvement to movement!
Chronic conditions take such a toll…stretching us to our breaking point…like a tennis ball on an elastic cord…we are tossed about without rhyme or reason.
We are bombarded by new or worsening symptoms…as we start a medication, deal with interactions between medications, struggle with adjustments to our prescription(s).
Add new diagnoses that further complicate our all ready complex situations…we truly push our medical teams…as they are thrust into the unknown.
The inevitable “Flares” that strike…some we know are coming due to choices we make (like going out to lunch with a friend…attending Parent Night to meet our son’s teachers…a simple short ride in the rig)…others strike for no apparent reason…forcing us to cancel plans…to retreat to the safety of our homes.
It is no wonder that we often feel that we are going backwards…despite our best efforts.
Yet I caught a glimpse of something precious when I paused with my eyes closed…in that short time, I took time to review the past few weeks…months…and saw progress!
I am speaking of those little changes…sitting through a rented movie –actually being able to focus and watch it…no recent falls…sleeping in a four hour block at night.
Take heart! Even when we feel like we are going backwards rather than forwards, we are progressing.
This morning was a scheduled appointment with my pain specialist for another adjustment to my pain pump. I also had questions regarding getting off of Cymbalta. Three weeks ago tomorrow I started the process of removing Cymbalta from my medication list…as you have seen on prior blogs, for the first two weeks I took the reduced dose daily…to be followed by two weeks of the reduced dose every other day.
Today was one of the days to take the reduced dosage. Within 45 minutes, I was experiencing those darn electric shocks — roughly a jolt every 30 seconds; severe abdominal cramping; extreme brain fog (trying to write this is SO difficult); extreme nausea; right side of body is on fire, burning from head to toe; muscle spasms in legs, arms and hands; skin hurts to be touched –even by the lightest of shirts; intense irritability that I am having a hard time controlling; feet throbbing and stabbing…these are the most profound and outside of the “usual” intensity when experienced during my “normal” day.
I was able to let him know that this type of “flare” had taken place with each dosage during this every other day schedule…not to mention that many of these have present since lowering the dose 3 weeks ago (just less intense). Thankfully, my pain specialist said that I had been on the lower dosage long enough to stop taking it all together!
He told me that this is the most difficult part of the process. Getting off of Cymbalta is extremely difficult for a lot of us! He did say that my body should settle down within the next 3 – 5 days.
This process has been rough…to be honest, absolutely horrible! Yet it is helpful to have, as my Dad put it, “a light at the end of the tunnel”!
I have learned so much in dealing with chronic pain…whether it be Pelvic Floor Syndrome, Rectal Prolapse, Spastic Sphincter, Fibromyalgia, Chronic Pain Disorder, IBS-D, Polyarthralgia, Colostomy, Hysterectomy, Benign Tumors, fluid build-up, Peristomal Hernia…there have been many lessons.
I know that our Heavenly Father has used these illnesses/conditions to teach me many things…the lessons have not been easy…it has been a rough road that has had its many challenges…however, I have had the support of family, friends and, of course, our Heavenly Father.
I have learned:
- To be humble
- To allow others to do things for me
- To say “No”
- To be patient with myself
- To take naps
- To appreciate small talk
- To not take anyone or anything for granted
- To appreciate the view through my window
- To enjoy a ride in the car
- To accept my limitations
- To understand that I cannot always follow through with our plans
- To know that there is no way to predict how my body will feel
- To know that I can choose my attitude
- To better appreciate time in prayer
- To take more time to listen
- To prepare simple meals
- To ask for help
- To smile no matter how I feel
- To always appreciate a hug or gentle touch (no matter how much it hurts)
- To become my own medical advocate
- To speak up for others with similar conditions
- To never give up
- To see the best in those around me
- To encourage others
- To be sincere
- To use my wheelchair
- To use my walker
- To use electric carts
- To see medication as a tool to help improve my quality of life
I know that there are many more…my mind now draws a blank…
Each step we take…to allow others to do for us…to utilize all the tools that we have been given…is a step in improving our mental health, our relationships, and our confidence. Our bodies may fail us; however, our faith can keep us strong.
After battling insurance and going back and forth with my pain specialist’s office, I was finally able to have the extended release of the medication my specialist wanted me on filled!
The entire ordeal was VERY exhausting…both mentally and physically! The relief I felt once I held that bottle in my hands was overwhelming!
I am anxious to get the next few days under my belt to see how my body reacts to this new schedule. As expected, I have been much more sleepy than normal…unable to keep eyes open…so curling up in bed for unscheduled naps. This is how my body reacts the first 4-5 days…should then settle in to a better routine.
My pain specialist has also supplied additional information to insurance regarding the pain pump trial. That battle is taking quite some time. My insurance will change up come January so will be interesting to see if we have to start from zero or be able to resubmit the package they have assembled to the new insurance.
I am still amazed at how insurance dictates the treatments/therapies that the doctors/specialists prescribe for their patients! How insurance can have such power with NO relationship with us, the patients, just blows me away!
Thankful for the moment though! I am eager to see if we might have found the right combination of medications for me…at least until we can attempt the pain pump trial.
From out of nowhere
The jolts begin…
As if plugged
Into an outlet…
Sudden electric shocks
Racing like strong currents…
Followed by the unnerving sensation
Falling, as if from high atop a cliff…
Thankful the legs are not involved
At least not at the moment…
Just the entire upper body
Twitching and jerking…
Which way is up?
Best to curl up
Have walker close at hand…
Falling without moving
With electric current snaking…
No nerve left alone
At random, combinations charged…
How long will it last?
Duration is unknown…
Must lay low
Homebound for sure…
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.
Chronic pain has been a “gift”
Of Heavenly Father above.
How so can you ask?
I can feel your disbelief.
This knowledge did not
Show itself overnight.
A long and winding path,
With falls and steep climbs
Crossing through unknown terrain,
Forced to cry out…to ask for help.
God has used my brokenness
To show his strength and power,
To show his mercy and peace…
He has blessed me with visitors
At times I’ve been low.
He has delivered a text
Of comfort from a dear friend.
He has provided a quiet voice
Whispering scriptures to my mind,
“I can do all things
Through Christ which strengtheneth me.”*
Through the stillness
Of being homebound,
He has demonstrated
His answers to prayers.
Chronic pain at first glance
Appears to have taken all.
Yet, in reality,
A new world has been opened.
The stillness and quiet
Provide time for prayer
To read scriptures
When eyes can focus.
Silent words spoken
Throughout the day.
I am being taught
To listen to His voice,
To treasure a knock at the door,
To share my journey,
To accept my “new” self.
*Philippians 4:13 KJV