Looking Back

 { Note: This piece was submitted and used by the American Pain Foundation in February 2011.}
 Since October, 2011 my pain specialist has come to terms in helping me to find treatments that help, not just mask the pain symptoms. Whether it be an increase in medication, new medications, or other procedures to minimize my symptoms, she stepped up the plate.
Finally. It took an entire year of fighting, an entire year out of my life spent fighting the fight of living with chronic pain. Again.
Below please find the piece submitted to APF and know that those days were so dark, and today are so much brighter & lighter
The point?  Keep Fighting!

 After living daily in pain for over 26 yrs and having at one time it managed well I am now back into the constant fight again.

I was coping so well my pain doctor referred to me as her “poster child.“  First time in over 26 years I had not been on mega doses of pain medications.
I had agreed to try a medication vacation to see where I was at trusting that my doctor knows I am experienced by now in what works best for me.

After changing medications, adding some new ones,  I was doing great. I had dropped my pain medication vastly, and that was just in the morning to kick-start this crumbling body.
Even though my pain doctor is my pain specialist, someone I can turn to help manage chronic pain, her duty first to me is to cause no harm.  – But this time her inaction she did hurt me.
In 2010 I decided since I was doing so well for over a year to take a long desired road trip.  A vacation I had not been able to have prior because of my health.
The weeks vacation was awesome but soon became clouded on my return home with a flare-up of FMS symptoms along with cervical and thoracic  issues in my spine  My pain level exasperated up to where I have no control  over it again.
This was back in October 2010.  I am still (2011) in a flare, and apparently because my doctor has seen me coping well with far less medication she refused to give me an increase.
The point of what I am getting at is this:
It took me being in unbearable pain again; and having a complete melt down because I have no way to cope, until finally I was being taken seriously.  Yet Again.

My body is exhausted from the pain and from lack of sleep. I am done.  This is the only reason I got her attention. Because I was becoming dangerously depressed.
 That is just a sad state of affairs when a physical symptom is left untreated until an emotional or mental one presents itself. Never mind what it does spiritually to ones soul.
I know my body well. I know what works, and I know what is a waste of time and money for me.
After living with this condition and other over lapping conditions that continue to cause intractable pain {for 26 years} I have gained quite a bit of insights into my self.
 I had high hopes I would never struggle again to find a way to continue to function in my all ready compromised life.
I am a valued contribution not only to my family but my community as well. I have been a strong advocate for myself and others concerning living a functional life with chronic illness & pain. I also have been a strong advocate and ally to children who are faced with abusive situations and have no voice.
While I am able to function these two passions take me away from myself, away from the pain, this is a great coping skill to be sure.
I have to be able to focus on something else than pain, so that I will not allow my mind to go anywhere else.  

I believed taking myself down to a more “reasonable” dose of opiates was a good thing for me.
I found that I was doing well and that there seemed to have been a viable reason for me to find out if I could manage to my  lower my medication levels.
But it did not take me long to be right back where I was 26 yrs ago when this flare up of symptoms began to mess with me and my life.
  Just in one year to be exact.  I was spiraling out of control again.
 I was not the one in control anymore. The doctors once again had the power over life. Power over what I was able to do, and not able to do. Power over whether I could get out of bed, have a decent and productive day.
Control over whether I could participate in my life.
When I asked if there was a valid and scientific reason for not increasing my medication until I could once again get back in my saddle I was first told no.  Without any reasonable explanation.
Have I said how much I resent asked questions not being responded t? Always makes me suspect why.
It took a complete major increase in my pain level and the vicious circle of spiraling intense pain and all the emotional and mental impact to have any real sincere attention being finally attended to. And in the end the treatment modality was just what I had asked for in the beginning. 
I agreed to try the medication vacation to see where I was at concerning any changes that may have been being masked by the medications.
I am experienced by now in what works best for me. I never expected to be denied an increase if my pain warranted it. If I say I need more help in minimizing my pain I am not playing around. It’s an honest and sincere request.
After changing meds I was doing great.
But now because of an increase in pain and symptoms I need more help. More medication help. I have always been compliant with the other treatments prescribed. I also use other coping skills and tools I have created and learned over the years.
None of these are helping at all. Not touching it. I am not sleeping, not eating, not functioning again. I have fallen out of my saddle, so to speak.
My big quandary along with the pain that is making my life unbearable again is why?
Why, if in the past 26 years this particular medication treatment was best at having an effect on the pain,  but without all the side effects…why not give it to me again?
Why let me go through 12 months of more increased pain when there is something that can help minimize it before it got out of control?  Chronic pain does that, become out of control if not treated adequately and promptly. If treated immediately and with adequate dosage the pain does not need to turn into the vicious, spiraling out of control circle. The squirrel cage effect is what I call it.  
We as people living in pain everyday should never have to be left to have our pain levels sky-rocket out of control.  We know, even if the medical community doesn’t how hard it is to gain back control and once again be able to cope. I know the medical community knows, but they have their own agenda’s that come first.  They are putting themselves and their practice first.  I’m not sure I feel this is appropriate,  but I am not a physician.  I wonder though how physicians who are in chronic pain whether from a terminal disease, chronic illness, or an injury manage their own pain.  

We know how destructive this is to our bodies, our lives and even for our families. But I am doubting that physicians get this. That they are unable to look beyond their own noses.
Why doesn’t the medical communities know this?
Or do they?
But are they far too consumed with protecting their practices from patient’s like me?  Someone who has never abused the trust given to me in the first place, or the trust I tended carefully to earn. A trust that my life depends on.
My regret is that I have allowed someone once again to have this much control and power over what my body is doing.
After living daily in pain and having at one time it managed well I frustrated beyond that I am back into the constant fight again.
I  do not have the strength to fight this good fight anymore.
I am so done~

8 thoughts on “Looking Back

  1. Pingback: Which Way Is Up With Al? | terry1954

    • Oh My word lady friend! You have touched my heart is ways that humble me greatly. Can I send you a cyber garden of brilliant show dahlias to say thank you?
      You are such a loving friend and I am blessed be cause of you.
      Thank you! Thank you!

  2. I am a Vitek survivor. I have been following Barefoot Baroness Baroness FOR YEARS. Until this moment I have been reticent to come forward. But I have moved past that point.
    Dr. Jack Kent did in fact, place the incredibly crude and primitive toxic Teflon joint in my head, at LSU school of dentistry and way back to sometime between 1983 to 1884.
    Oh my goodness.!!

    • Hello Katherine!
      So good to hear from you though breaks my heart why.
      I’d love you to join the Facebook survivor’s grouo I formed. There are currently 54 of us and we’re not going away or living in silence about what happened to us.
      The group is private.
      Only the the members of the group (who I as the founder and administrator who joins) can see what’s posted.
      Please join us. Just send a request to join at

      I fiercely protect all of our privacy.

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