It was 5 years ago today that my parents received the call. Carrie and Billy were in an accident. Carrie died at the scene and Billy was in hospital. All I could think of was getting to the hospital to see both of them! Just wanted to give Billy hugs and talk or sit.
Ally was able to meet me at the hospital to go in and see Carrie. Very emotional yet so reassuring! We could both tell that she is in heaven and just a shell remains.
Her Celebration of life and burial were amazing! All of those whose lives she had touch! Those from the law firm where she had been hired arrived in a bus! So many friends and family! Truly touched me.
Fast forward to today.
Our hearts will feel heavy today as someone so dear so endearing would be taken from us.
Yet Carrie’s legacy is living on through our memories, pictures, stories and her Memorial Scholarship awarded each year by University of Oregon Law School in her name. Students learn about Carrie and for 3 years now have been award the scholarship in her honor. Each one is touched by Carrie and so thankful!
I love seeing her picture and that smile! I will always hear her laugh and voice in my heart. She is part of us and always be so!
Love you forever and always Dear CareBear…
Those of us living with Fibromyalgia and its chronic pain (or chronic pain from other conditions) often find ourselves ravaged by a storm…literally! Scientists can argue that there is no relation…that it is not possible. Yet we know there is a link.
Our bodies shut down with no warning. Struck in the gut with a baseball bat. Then the pounding truly begins…every joint stabbing…headache is piercing. Every ounce of energy invoked to attempt movement…feet act as though they are trapped in the thickest mud…legs groan at the beleaguered motion.
Tears well in my eyes. I can barely manage a weak good night as I muster all effort into shuffling back to my bed. Past experience has taught me to not fight this demon. It is best to lie down…propped with pillows to provide as much relief as possible.
This will pass. I am hopeful for the morning as the worst of this storm will be over. My body will be exhausted and require additional rest.
This is a vicious cycle that so many of us live with…as we continue to battle our conditions and symptoms.
Rain brings an increase in temperatures
As it washes snow off the lava…
Rain brings the wind blowing the tree limbs
While cascading the water down the glass…
Rain brings the storm from the Northwest
As it batters the roof and races down gutters…
Rain brings increased ringing in my ears
Drowning out external sounds with its deafening pitch…
Rain brings the joint pain out of remission
Removing the relief of the higher elevation…
Rain brings elevated pain levels
As my body screams out for it to end…
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.
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…
These pictures reflect the reason that we choose to join our families…our chronic conditions would prevent such moments.
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.