Embracing life with chronic pain and illnesses.

Posts tagged ‘hidden illness’

Hope

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!

A Glimpse of the Unknown

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.

Struggle

The frustration is real even though progress is occurring. Sounds like a conundrum doesn’t it?

Injections for Sciatica have provided some limited relief…unveiling that I am also dealing with Sacroiliac involving my right leg. And, these new diagnoses have aggravated my Shingles…which also targets my right leg.

Needless to say my usual “companions” are quick to throw in their two cents…like I need to be reminded of my Fibromyalgia, Polyarthralgia, Spastic Colon, Pelvic Floor Syndrome, IBS and other conditions.

I have more to learn about the issues in my stomach that are leading to bloating and cramping (which are very scary with a colostomy); and, its interaction with my other conditions. Another diagnosis that will provide more information on how my body is “malfunctioning”.

It is frustrating to be home bound…yet, we are making progress in uncovering other conditions that have been masked by the overwhelming symptoms of Fibromyalgia and Polyarthralgia. (Thanks to my pain pump!)

It is discouraging to know that any time I leave the house it will result in a Flare. To be honest, just getting out of bed wrong can do the same!

The struggle continues…

Backwards

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.

Another Tangent

As if our body’s aren’t under enough stress with our hidden illnesses and conditions, there always seems that more gets added to our plate!

I have been absent in dealing with “new” pain affecting my lower back and both legs. Results of the MRI showed Herniated discs (L4 and L5, S1 and S2) and arthritis in same area. So yes, definitely Sciatica.

I will go in for steroid injections next Wednesday. I do hope they provide relief. It would be SO nice to go back to my “usual” pain!

A Flare Like No Other

Unrelenting pain

Coursing through every cell

The slightest touch exacerbates

Pressure from the softest cloth

Becomes a knife with serrated blade…

Skin crawling

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…

 

 

Another Scan Completed

Halloween morning I was scheduled for a Gastric Emptying Scan to see if my stomach is also involved in my GI issues.  I can hear the question all ready…”why did it take so long”?

Like so many with chronic conditions/illnesses, we are dealing with a number of disorders/syndromes that have a lot of overlapping symptoms.  In my case, the precursor was fissure trouble from a very young age.  These fissures were just the beginning of a long, hard path of acquiring diagnosis after diagnosis.  Strewn with procedures, further testing and surgeries.

This latest step is a “gift” from my current pain pump.  My GI Specialist would not have ordered today’s scan without my being able to specifically describe my continued GI issues with him.  This ability to determine (or better word — guesstimate) what condition/illness is the forerunner led to my realization that there is something going on that has not been addressed!  These continued issues of bloating, stomach pain, abdominal cramps were subtly different.  It was almost camouflaging itself as an IBS flare…yet, again…there was a nagging difference.

Fast forward to this morning’s scan.  This test was quite different from others in the past. No clothing had to be removed…would have been able to keep my coat on if I felt more comfortable in it!  It started with eating some “radioactive” eggs.  By the second bite, my body remembered that taste…albeit in a different format — thick shake and also a more liquid variation.

I remember looking at the bowl, afraid that I would not be able to eat it all.  I asked the technician how much was necessary for the scan.  His response was a few more bites.  Yeah!!  I managed to get enough down to head into another room for the scan.

Lying flat on the table, arms close to my sides, I was slid into position.  A boxlike piece was then lowered (which required some self talk to calm my PTSD).  The images were gathered in minutes.  I didn’t have to hold my breath or alter it in any way!

This scan process was performed roughly every 50 minutes.  So in between scans, I was wheeled back out to the waiting room (thankful that I had my comfy wheelchair)!  It can take up to 4 scans…thankfully, I only required 3!

The hardest part of this scan was not being able to take the oral pain med.  Thankfully my pain pump was doing its job! Would have never made it through this without it.

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