I've Tried to be a Good Pain Patient!

Lately I've been reading "The Pain Chronicles" by Melanie Thernstrom and I've learned a lot about pain.  I strongly recommend this book to anyone who has pain or lives with someone who has pain.  I recently read a chapter about being a good pain patient and I have tried to remember times when I might NOT have been a "good" pain patient.  I couldn't come up with anything unless asking for different procedures or tests to find the cause of this pain constitutes being a BAD pain patient.

Having some medical background (former EMT, nursing student, and lifelong medical freak) I know how difficult it is for a doctor to take pain at face value unless there is some obvious injury.  I think that's what kept me from seeking help in the first few years.  My primary doctor, Dr. D., referred me to a doctor who specializes in rehabilitation and pain, Dr.P. What follows is something that occurred while I was seeing Dr.P for many years.  After this incident I have struggled to find the point where I was a bad pain patient.  Read on and I think you'll see why I say this.

I would see Dr. P, get my assignment for Physical Therapy (PT) or a new medication, increase in dosage, or some other treatment such as a TENS (transcutaneal electrical nerve stimulation) unit.  I would call his office after a specified period of time to report to his nurse and set up an appointment.

At the time when this happened, I had been on opioids for a considerable time (at least a year, probably more like 3,) and I called to report on the dosage increase. I would also get my next appointment date and time, per usual.  His nurse took my information, put me on hold (nothing new) and came back to the phone.

"When is my next appointment?"
"Just a moment..."  she put me on hold again...
Nothing new - really - the lady who ran the appointment calendar could have been busy and she needed to address something else.  I'm used to being put on hold in a doctor's office.
"Dawn?  Dr.P. said he does not want to see you again."

My jaw dropped.  "He what?"

"Dr.P doesn't want to see you again.  He suggests you follow up with your primary doctor."
"Why won't he see me?"
"He didn't say.  He just said he didn't want to see you again."

Now that I look back on this, it's like a junior-high-school boy (who has no balls) using some common female to break up with his girlfriend.  Wow.  I had the ULTIMATE respect for Dr.P until he wouldn't tell me WHY he wouldn't see me any longer.  He didn't tell Dr.D either.

I'm shaking my head, thinking how I have gone NOWHERE since my appointments with Dr.P - - well, except the increase in my opioids that Dr.D won't increase anymore.

Is THIS the way to treat a pain patient?

What does one do when frustration builds?

I have had so much pain lately that I am at the end of my creative rope. By that I mean that I don't know what else to do so I can find some sort of relief from this pain.  I live day in, day out, with chronic pelvic pain.  It's about where one would experience appendix pain in early appendicitis - on the lower, right hand side of my abdomen. I have had surgeries to remove my uterus (hysterectomy,) my ovaries (oophorectomy,) my gall bladder (cholecystectomy... and I know that's not in the lower right of my abdomen but it was causing a lot of pain!) I have also had exploratory surgeries to see why I might be having pain both before and after the -ectomies I mentioned.

When I was 15 I was diagnosed with endometriosis. This is where the lining of the uterus somehow starts growing outside the uterus in places like the abdominal cavity or on the ovaries. At that time the doctor who did the exploratory surgery said I was the youngest case he'd ever seen. All I remember is it hurt all the time and was worse during my period.

Over the past few months this pain has gotten so much worse. I am beyond tears right now.  I don't know how many people know the frustration of going to the doctor, finding out the doctor is not in and someone is on call for them, then having THAT doctor say "I think it's all in your head," or "I'm not going to support your habit!" It is much too hard for me to deal with.

I have decided to get my medicinal marijuana card.  This decision has taken me a couple years to make. Montana has legalized medicinal marijuana but there are some problems.  Right now I want some relief from the pain I live with every day.  Even if the pain is decreased, allowing me to go to the grocery store or see a movie with my dear husband, that would be wonderful!  This blog will chronicle my life as I am pursuing a life with much less pain than I am feeling now.

If you have pain and can empathize with parts of this post, I am sorry you live with such a condition. I hope you will find relief and I hope Pain will become a condition in and of itself - not just something secondary to an injury.  The pain I've had has gone undiagnosed and untreated for so many years that I believe it has rewired my body so it always feels pain.  If, miraculously, a cause for this pain is found, I will be so relieved! I also won't be getting my hopes up that correcting the cause will alleviate the pain.

Off we go into this journey through the system - trying to find something to help me function on a day-to-day basis.  I hope you'll join me!