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 opiate pain medications.
I had  agreed to try a medication vacation to see where I was out. 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 opiod medication from  180 mg to only 5mg. in the morning to kick-start this crumbling body.

 

Even though that my pain doctor is supposed to be my pain specialist,  someone I can turn to.  Her duty first to me is to cause no harm.  - But she did.
 
My husband and I decided since I was doing so well for over a year we were taking a long desired road trip.  A vacation we had not been able to have prior because of my health.

 

The vacation was awesome but soon became clouded on our return home with a flare-up of my FMS symptoms and the cervical issues in my spine  have my pain level exasperated up to where I have no control  over it again.

 

This was back in October 2010.  I am still 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 emotional melt down because I have no way to cope, until finally I was being taken seriously.  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.

 

I know my body well. I know what works and 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 pain. I also have been a strong advocate and Ali 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 which is a great coping skill to be sure. But I have to be able to focus on something else than pain that 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 still do ]
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 my “lower” pain levels without as much opiate medication.

 

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 over 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 dose until I could once again get back in my saddle I was first told no.  Without any reasonable explanation.
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 paid.

 

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. had dropped my opiate medication from   180 mg to only  5mg.
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’ she has 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 fell 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  was working,  Why not give it to me again?
Why let me go through 5 months of more increased pain when there is something that can help minimize it before it got out of control?  Chronic pain does 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.  But I believe 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 for over 26 yrs and having at one time it managed well, I am back into the constant fight again.

 

I  do not have the strength to fight this good fight anymore.

 

I am so done~