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.
In the early morning hours while saying a prayer, images were brought to mind. It was as if I was watching a slide show highlighting the path of chronic illness that I have been traveling. So empowering and providing such a tremendous peace, that I must share!
With spot light in hand, God provided a glimpse…a “bird’s eye” view of my path. It was like looking at a map. I could see that with each boulder, rock slide, downed tree, or gaping hole there was a small, hand drawn box. The boxes ranged in vicinity to the obstacles…sometimes it was next to the obstacle, sometimes it was a mile…yet with EACH impediment there was a box associated with it.
This personalized Isaiah 64:8 — “But now, O LORD, thou art our father; we are the clay, and thou our potter; and we all are the work of thy hand.”
These boxes were the many “tools” that have been given to me! I am truly humbled and overwhelmed as I ponder this revelation…friendships, medications, Bible verses, change in attitude, phone calls, songs, surprise visits, text messages…
Some of these “tools” reappear to demonstrate how some are repurposed like my hernia belt that my husband had modified for me due to my Colostomy. This belt is now providing some relief to the Sacroiliac joint that is inflamed as I await the appointment for a steroid injection to reduce symptoms.
As I await results from additional testing, I am thankful for the “tools” that God has granted to me, especially for my family, friends, and medical team.
Chronic illness and pain often leaves us feeling like we are driving a hazardous road in the blackest of nights in blinding snow.
I hear the tumultuous waves crashing nearby. My knuckles are white as I clinch the steering wheel ever tighter.
My body is overwhelmed, yet again, with increased stabbing pain and extremely overly sensitive skin…I am counting hours to my appointment tomorrow. A much needed refill to my pain pump and discussion of my latest MRI.
In the early morning hours, as I laid in bed feeling the pain ramping up, I prayed for a touch of relief…tears could not help but fall. I was granted a little more than an hour’s fitful sleep during which I was given an awesome dream.
I dreamt that I was clinging as tightly as I could to a rock as a storm raged around me…pounding pain, large hail stones striking exposed skin, winds whipping and tearing around me…every pore seemed to be screaming as the pain within was rising to the symphony around me. Then I opened my eyes to see that I was clinging to Jesus, his back taking the brunt of the forces.
I awoke with a renewed sense of hope…looking forward to tomorrow’s appointment…knowing that I am truly not alone…that my prayers are being heard.
Coursing through every cell
The slightest touch exacerbates
Pressure from the softest cloth
Becomes a knife with serrated blade…
Interrupted by nausea
Hunched over by the cramping
Right arm and shoulder on fire
My body a living pin cushion…
The light is overwhelming
Yet the darkest room offers no relief
No comfort to be found
A headache begins to form
Sensations are racing to and fro…
The intensity of symptoms
Raging and fighting…vying for attention
My brain is on overload
Waves of pain bombard me
My body sinks into the depths…
I take pause
To breathe deeply
Soft spoken words
Pleading for the slightest of relief
Peace comes to my mind…
My symptoms still enraged
As I am enveloped
By a sense of calm
Like a thick blanket
Renewing strength and focus…
It is amazing how far I have traveled on this path of chronic pain and illness. The pain pump has been a major milestone! It has given me the ability to determine where my pain and discomfort is coming from…rather than the symptoms just shouting over each other to be heard.
Almost two weeks ago, I was able to explain to my GI Specialist my abdominal issues with specific symptoms! With my complicated history which includes Pelvic Floor Syndrome, rectal prolapse, spastic colon, permanent colostomy (sigmoid colon and rectum removed), and IBS, it provided the glimpse that he needed to best determine the next step. I will be undergoing a Gastric Emptying Scan next week to determine if my stomach is working properly…must determine just how much of my GI tract is involved.
I am anxious to find out if the malfunctions of my lower GI tract are “isolated” or if my upper GI tract is also involved. Another crucial piece of my medical conditions will be better understood!
As so many of us with chronic conditions know, it takes time to put all pieces together. It takes so much effort and energy to get diagnoses due to whatever symptoms are screaming the loudest! Living with Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, Somatic Symptom Disorder, Neuralgia, Postherpetic Neuralgia, Paresthesia along with the above referenced GI disorders make determining the origin of symptoms extremely difficult.
So many years…so many doctors…so many appointments…not to mention the tests and imaging/scans! This path of chronic illnesses and conditions is not easy…there are no easy fixes…it forces us to rediscover ourselves while it strips us of the lives we had.
Viewing the awesome landscape of the early morning with the chorus of “Amazing Grace” playing in my mind…
“Amazing Grace, how sweet the sound,
That saved a wretch like me.
I once was lost but now am found,
Was blind, but now I see.”
The gift of a new day with just a hint of God’s power and majesty on display.