Today I had my long awaited appointment at the Fairview Pain Management Clinic in Blaine. I was so excited to go to this appointment, so ready for someone to help me manage my pain in a more consistent manner than I am right now. I was excited to meet people who had the same goals as me and to help me work towards a life with less pain. I had seen so many women with PCS and IC and CPPS on my support page getting back to their lives after visiting their Pain Clinics that I thought for sure that is where I was headed with this appointment.
I was so wrong.
The appointment was set to be 2 hours long. I would first meet with Georgia, a psychologist who would evaluate my mental state and then I would meet with Dr. Paidin for the physical exam. As I am sure you know, I already see a counselor weekly to learn coping mechanisms as well as for emotional support with my pain. Regardless, I was happy to meet with Georgia and discuss my condition with her.
I checked in for my appointment about 5 minutes before my scheduled time, and within about 10 minutes Georgia herself came to the waiting room to get me. She introduced herself and lead me down the hall to her room so we could chat. She asked questions about my family life, my job and my experience with my PCP. She asked about what it was like to have 2 kids before I was 21, and how I got out of an abusive relationship when my daughter was 3 months old. She asked about my husband, and my family history of anxiety. She asked one -just one- question about my pain. “When did the pain start?”
Now, I understand that it is important to understand where a person comes from, and what kind of outstanding circumstances may be affecting someone’s life and adding to their pain. I still think that it would be important to ask questions about how I cope with the pain, what all of this looks like to me and what I would like my life to to look like once I complete this program with the clinic. Georgia did not ask me these questions. In fact, she focused squarely on the abusive relationship I was in over 7 years ago. She also keyed into the anxiety that runs in my family as well. She did not ask if I was medicated for anxiety or not however, which I would have answered with a proud “no”. (I used to be, but exercise and yoga do great things for anxiety.)
After about 30 minutes (and a knock on the door that required Georgia to attend to another matter) Georgia concluded our visit and left me to wait for the nurse who would take me to my next appointment. 10 minutes later a nurse came in and moved me down the hall to an identical room to meet with my next doctor, she quickly took my vitals and then left me to wait for Dr. Paidin.
I waited just a few minutes before he came into the room, he introduced himself and shook my hand before sitting down. As he flipped through my 14 page questionnaire (required by the clinic to be completed before your appointment) he asked me when my pain started, what procedures I have had and what my pain was like on a daily basis. While I was answering his questions he rarely made eye contact, constantly shifted in his seat and sighed heavily as if her were overwhelmed or annoyed. I was -understandably- excited and a bit animated during our meeting, so I adjusted my excitement and tried curb my answers (I talk a lot can you tell?). When I did that, he asked for more information, so returned to my detailed explanations. He commented several times on the fact that I was self aware, and that I was good at ‘recalling the facts’ of my condition. Apparently this is rare for their patients.
After we went over the basics he did a physical, checked my reflexes, pushed around on my belly and pelvis, tested my flexibility and asked a few questions about the things I have already tried for treatment. As he finished up there was a knock at the door, and he excused himself to speak with a nurse in the hall. (Interruption #2) When he returned, he asked me more questions about what my pain feels like, how often it hurts and where. At one point I asked him what he was thinking about all of this and he said “I bet everyone wants to know that when they are here. I will tell you, but not just yet.” He asked questions about my home life and my job, which I had to answer more than once as it was clear he wasn’t listening the first time he asked. He spent several minutes trying to figure out which of my kids were really “mine” and which were step. He also kept asking what their ages were, and I could see him doing the math in his head, realizing I was quite young when I had them. As if that mattered somehow.
Several times I found myself biting my tongue to stop myself from asking if he was -indeed- annoyed or if I was offering too much information.
At about 2:30 he wrapped up our meeting and said that he was going to meet with Georgia and then they would return to discuss what they were thinking with me, and to come up with a treatment plan. I waited for 45 minutes.
When they came back into the room it was like a tornado. Just as they got in the room a nurse knocked at the door and said “I need Dr. Paidin.” in the same tone my mom used to use when I was in trouble, and he left. In his absence Georgia began to discuss what her side of the treatment would look like. She explained that we would work on EMDR which is a therapy that consists of focusing on the worst part of your condition while tapping sides of the body, or listening to tones delivered through ear buds. This kind of therapy is though to work well on PTSD patients. (Learn more here:http://www.emdr.com/general-information/what-is-emdr/what-is-emdr.html ) She then explained that she felt my pain was escalated by stress remaining from my abusive ex. The best part was when she told me that my body feels pain because it is trying to tell me something is wrong (no kidding?) and said that I should spend 10 minutes a day focusing in on the worst part on my pain because that would give my pain the attention it wants, and then I would feel more relaxed.
It’s ok to laugh, I did.
As she was speaking, Dr. Paidin came back in along with another nurse. While Georgia and I were speaking, Dr. Paidin and the nurse (Holly) were also having a conversation so it was hard to understand much of what she said and then she was gone. Turns out Holly had to purpose in that room and after some shuffling she left, but not before I was thoroughly confused about Georgia’s plans for me.
Dr. Paidin first asked if I was interested in acupuncture, I explained my massive discomfort with needles and we moved on. He recommended anticonvulsants and antidepressants as ways to dampen my nerve responses to pain. He explained that my nerves just think I am in pain all the time, but that in actuality my nerves were just hypersensitive after feeling pain so consistently for so long. At one point, he used the word “multi-functional” and then apologized for using such a ‘confusing word” and then explained it to me like I was five. “No worries,” I said ” I know what ‘multi-functional’ means.”
Are you kidding me?
Not once did anyone ask me what I was looking for in all of this, or what I wanted out of my treatment. No one asked what my expectations or goals were, or what I thought might work. He did invite me to ask about other therapies he hadn’t thought of but when I suggested a therapy he hadn’t brought up yet, he said I needed to discuss that with my PCP because that wasn’t his ‘area’. We sat in an uncomfortable silence for about 5 minutes before I asked: “Do you have any experience with this condition? Or other patients with this condition?” He looked at me and smiled and said “It’s pretty rare, this condition. I doubt you’ll find any doctors who know what it is.”
These people had my file for 3 weeks, and actually had to review it to see if I was a candidate for the pain clinic. Don’t you think that someone could have taken the time to educate themselves about this condition before they saw me? Maybe then they would have known exactly why my pain is worse at the end of the day. It’s not because my body thinks it should be because it wants Percocet. It hurts because the second my feet hit the floor in the morning my veins start to fill with blood and swell and hurt and cause other things to hurt.
If someone had Googled PCS just one time they would know that it is not rare, that 30% of women experience PCS in their lifetime and that most of them are drowning in this ridiculousness just like me. If he had taken the time to actually ask a colleague about this condition maybe he could have helped me. But he didn’t, because clearly he doesn’t believe it is there.
It amazes me that a person can hop from emergency room to emergency room and leave with bottles full of narcotics. Never having a primary care provider, never having had a procedure or diagnosis. But a person like me, who follows the rules and jumps through all the hoops is treated like she is crazy. It makes me want to puke. How is it that I know people on Morphin and Oxycontin because they have a sore back or arm but I get scolded for taking Percocet when I am balled up in pain crying my eyes out?
So what now?
Well, as Dori would say…….
“Just keep swimming.”