Thriving Thursday – My Chronic Pain Story

I am a Chronic Pain Warrior

sickntiredI was deemed “disabled” in May of 2012.  I have a lengthy list of diagnoses, some of which are pseudarthrotis, spinal stenosis, degenerative disc disease, fibromyalgia, arachnoiditis, depression and anxiety.  Even with these diagnoses, I still look like the same person I was before. Just a little, ah who am I kidding, a lot more tired and a little slower. That is what is the hardest for me. I don’t look disabled.  I don’t look like I need that handicap parking tag.  I don’t look sick. But it is very real.   I know there are a lot of chronic pain warriors out there just like me.  Thus, I want to share with you a part of my story

The Chain of Events

LifeIsHardButNotImpossibleMy pain story starts with a simple discectomy to resolve a bulged disc. I was 24 years old.  Fast forward 10 years and I have back pain again.  That lead to a discectomy and laminectomy.  Unfortunately, that did not resolve the pain.  Then there was talk of fusion. YIKES!  Trusting the doctors, I went through with my first lumbar fusion (L3-S1).  I hardly moved for months, pleading with my doctor and pain clinics to fix me, help me, anything to get rid of the horrid pain that was living in my body. I have no words for how I was feeling and what I was going through at that time.  I was at an all time low in my life.  I would have muscle spasms that were so bad that my screams of agony could be heard by our surrounding neighbors.  Any time I would move I was in horrendous pain, so I just didn’t move.  As a result of the non-movement, I ended up in the ER with 3 blood clots in my lungs.  I remember laying in the ER bed, with my husband at my side and hearing that I had blood clots in my lungs.  Blood clots that could have killed me, given me a stroke, left my kids without a mother and my husband a widower.  Only later did I find out during my next revision surgery (fusion 2) that the doctor found an infection in my spine.  My surgeon told me that they found a pocket of fluid on my spine and he sent it to be cultured, not to worry, he didn’t think it was anything, but just wanted to be sure.  Thank God he did! Sure enough, my 2nd day in the hospital, while I was recovering, I got a call from my surgeon, he had just got the results and was off sight and wanted to tell me that the results came back and I had a spine infection.  The nurses that had previously come in and out of my room,friendly, smiling and nonchalantly doing thier jobs were now coming into my room in what looked like hazmat suits and concern in their eyes.   Long story short, that lead to 8 weeks of injecting myself with antibiotics through a PIC line and many in home care nurse visits.  However, because of the infection, the bone graft that was place in my back, did not grow, thus sending me in for my 3rd fusion, the 2nd in 2014. That last fusion was in December of 2014, just 8 months ago. That is it, to this date…. and crossing my fingers no more fusions will be in my future!

As for my current status,  I am still recovering slowly. I am still on a 5 pound weight restriction with no lifting, bending or twisting and still dealing with pain that waxes and wains it seems by the hour. My body still has limitations on sitting, standing and walking, all of which cause more pain.

Moving forward, I was recently approved for a spinal cord stimulator (by having a successful trial). So, I am now waiting on approval from my insurance company to go forward with the implant.  Honestly, I cannot wait, even though that means another surgery. While I am waiting on that approval for the implant, I had a CT scan last Friday to see if the bone has fused in my back….I am crossing my fingers and hoping f0r positive results.

What I want others to know is:

  • What chronic pain feels like
    • aching, sharp pains, exhaustion (from lack of sleep and our body’s just trying to make it through the day), depression,
      unworthiness, moodiness, short of patience,
      anger, it’s a daily struggle to put on a mask of everything is great, lack of ability to plan (everything is based on how the pain is that moment in time), frustration of not being able to be out in the real world, isolation, constant struggle to accept the pain, loneliness, disconnection with the world, loads of guilt (not being the wife or mother that the spouse and children deserve), pain (always present), the need to be validated, overwhelmed, tiredness, memory issues/brain fog, lack of concentration, hips locking, toes cramping, knee giving out, upset stomachs, anxiety, fear, it feels like the entire body is disintegrating in front of your eyes.
    • I am sure for every list item that there is here there is another symptom or feeling that I missed
  • Everyday can be a struggle for those with chronic pain. Those with invisible illnesses and chronic pain look like everybody else, we look like we are fine. That could not be farther from the truth.  Everyday, those dealing with chronic pain and invisible illnesses wake up and fight the good fight to keep going, while dealing with this pain.  So, when you see me out, or others that may be like me,  know that we are just trying to function and doing the best we can.

DailyCycle

What I want others to know that are dealing with chronic pain:

  • YOU ARE NOT ALONE!
  • You can do this and please keep hope in your heart
  • If your doctor isn’t helping you, find a new doctor and keep looking till you find one that will listen to you.
  • Only you know your body, so you are your best advocate.  Don’t be afraid to speak up and tell people and physicians what you are going through.
  • Most Importantly, you are not alone.  There are many of us silent sufferers that put on the strong face and barrel through, but are wilting on the inside.
  • Make your story known.  Share your experiences.  You never know when something you say or do will change the life of another chronic pain warrior or just simply give them hope.

IAmStronger

I hope you come back and visit again soon.  Gentle hugs to all you spoonies out there!  Tomorrows another day 🙂 and as a wise woman shared with me,  your job is to just get up each morning and be.  Just be. Anything more is a perk. All you have to do is be you, and that is good enough.KeepCalmSaveSpoons

**If you are unfamiliar with the term spoonie, please reference the spoon theory  (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/).

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