Introduction - Who, what, where & maybe a little bit of why

This is my first blog post on Heroes of Healing, & I want to first say how hopeful I am to use this forum & blog to communicate some of my thoughts on my journey through chronic pain.  I hope those who choose to read it will find my stories, struggles, thoughts, and hope for some new changes in my treatment plan, my pain journey.  Encouragement, constructive advice or suggestions, or even questions and ideas about treatments or special supplements, etc., are important to me for any one who is interested in sharing your input or experiences you might want to share.  Please feel free to pipe in with your own contributions!  I am looking forward to participating in a forum of those interested in sharing our journeys together. 

To begin I will try sum up my past in a very short explanation:  I was in a car wreck in 2001 that left me with herniated discs in my low back (L4-L5, L5-S1), which originally caused me low back pain & no sciatic pain, but after my first surgery in 2003 I was able to go off meds for 18 months, then my sciatic pain emerged out of nowhere without provocation in October 2006.  Ever since I have had sciatic pain down my low back & into the backs of my legs every day, all day, without relief, and although I had two additional surgeries in 2007 & 2010, neither has assisted my pain greatly in providing significant relief (50% or more). 

Things have gotten a lot worse in the past 18 months or so.  I suffered an unfortunate intensifying of my pain symptoms in early 2010, which went from an average of 5 or 6 out of 10 on a regular day (not a bad day) for 4 years, to intense flare ups around 7 to 9 on really bad days.  These flare ups eventually worsened my daily pain to 8 or 9 of 10, on a regular basis. ups of my pain that caused my pain symptoms to increase with great severity, putting me at an 8 of 10.  I have not experienced much relief from medications or my new spinal cord stimulator, but I am trying to maintain a level of survival and ability to complete basic functions, and that is pretty much where I am at this point.  I am on the minimum of medications needed to get by, so I suffer a lot, because I would rather suffer than take medications that leave me unable to think or function. 

There were no particular reasons or activities that caused these changes in the severity of my pain, but my pain specialist hypothesized that I was undergoing an "un-anticipated intensifying of pain symptoms as my nerve condition worsened."   Her opinion was my condition was "just" getting worse, and acted as if I should be used to this sort of thing occurring more as I go forward, which no one had ever told me could happen of it was even a possibility.  

I am a former journalist & a writer in my heart, so I am big on research & information, so this has caused me to hunt down every speck I could on these issues.  I am very well informed, but sometimes the amount of information I find on different symptoms & treatments makes me anxious about the potential for things getting worse and how I will be able to cope if the pain or the weakness, tingling & numbness doesn't get better in even a small way.  So this anxiety is a curse for being so proactive about my health, as I am scared there are going to be no options in the end. 

Also, my mother who passed away when I was 17, she had a very rare chronic condition that was an auto-immune disorder that resulted in a severe chronic muscle & joint pain every day all day long.  She began to be afflicted with this condition when I was around 7 years old, & she suffered with it for around 10 years.  I have already reached the same number of years that she suffered with her pain & condition.  The last 2 years she was alive I took care of her on my own, I was a young teen and I was doing the grocery shopping for the family on my own, I made sure she took her medications on time, and that my younger sister (who was 12 & 13 at this time) & I had food to eat for dinner, breakfast, etc.  I didn't drive, so I had to walk to the store sometimes, and walk back with our groceries.  My mother slept in the living room on a pull out bed because she didn't want to or couldn't climb the stairs to the bedrooms.  She was afraid she would have a seizure, as she began having seizures with her condition progressing to her brain, and that I couldn't hear her while I was downstairs in the bedrooms.  So we got an intercom system to allow me to have a way to listen in on her at night or while I was in another part of the house.  My whole life was about taking care of my sister & my ill mother -- without any help from my older siblings.  Truthfully she had given up, and no longer cared if my sister & I were cared for appropriately, or if she were to continue living.  She felt ravaged by her condition, and I watched her suffer 3 seizures (which were very terrifying for me as a young girl) and go into the hospital for days at a time to recover.  

Eventually her final seizure caused a massive stroke and she passed away -- I watched her disease kill her.  & I am afraid that the more severe my pain gets, the more powerful pain medications I have to take, the more I will end up in her situation.  I know my injury caused me to have nerve damage and different pain than she suffered, & her auto-immune disease was aggressive, it was ascending & went from foot to knee pain, hip pain, stomach pain, & eventually overall body pain & seizures.  So this is not the case for me.  But I am scared nontheless -- & everytime a doctor gives me the message that there is nothing left to be done, no surgeries, no treatments, no therapies, I feel like I have to be practical & admit there may be some minor adjustments I can make but there may not be any more silver bullets, so I can try to live with myself.  While at the same time I feel I cannot give up hope, or I will simply curl up in my house & let my life fall apart all around me. 

I hope others among this group have some wisdom, I know we are all responsible for beginning anew and taking on things that help ourselves.  I am willing to do so.  But... I am also hoping there is a way to help me find my own compass in this journey through pain & in-ability to find independent ability and less pain again.