Imagine going to a clinic under the impression that the medical professionals that you would be working with would be helping you to figure out what type of injury you have and then you realize once you were in the clinic it was anything but that. Rather than help you, you were told you had to learn to accept the way you are, and when you say there is something seriously wrong they didn’t believe a word that you said. Well that’s what happened to me. This pain program, I’m sure it is very helpful for people who need help learning tools of how to handle living with their chronic pain. However, the tools they were teaching I was already applying to my life. I felt very misunderstood up there and I refused to accept living with a condition that didn’t even have an exact diagnosis. My orthopedics told me I had severe scapular winging but they weren't sure why. The pain clinic didn’t want to acknowledge that there was something very wrong with my shoulder blades; so for me this program was brainwashing hell.
You can think of this pain program like school. It’s a day filled with learning different subjects, along with attending physical therapy and occupational therapy. You would be released at the end of the day and when you wake up in the morning, the whole process starts all over again.
I have never hated a place more than I did at this Minnesota pain clinic. I truly believe they did more harm than good for me. The whole purpose behind going to this pain clinic in the first place, was because I had shaking/tremors down the right side of my body. The evil neurologist that I saw said I needed to go there to learn to deal with it. However, before I started the program, the shaking had resolved itself and I was told by IL doctors it was probably a virus. My father called the director of the pain clinic to let her know that I was out of a wheelchair because the shaking had stopped. He also told her I still had scapular winging. The director told him that I should still come to the pain program because she still felt it would be a huge benefit.
I should have known something wasn't quite right when I arrived to the pain clinic that first day. The nurse greeted my mom and I and said, "Are there any changes in your health?" I said, "Yes. The shaking down the right side of my body is gone." The nurse looked at me as she patted me on my shoulder and said, "That's nice dear" and walked away. My mom and I looked at each other confused. Wouldn't you think the nurse would send me back to the neurologist, or at least call him to notify him on the change in my condition? Nope, she didn't. She walked away and it was never brought up again. Very strange in my opinion.
Over the course of the next couple weeks physical therapy thought it would benefit me to do exercises that worked on getting my arms over my head since I was unable to, due to the pain. They completely ignored the "chicken wing" look I had over my shoulder blades and said I have to learn to deal with it. Weights would be put in my hands and I had to do various exercises. I would tell them that it killed but what I said didn't really seem to matter. Therefore, to please the physical therapists I would do the exercises but alter proper body mechanics in order to get the exercises done. This did not please them either. It turned into a constant daily battle.
There are two specific events that happened at occupational therapy that stand out in my mind. The first was when the occupational therapist went around the table and had everyone say something they have learned. I remember sitting there thinking, “Crap, what am I supposed to say? I haven’t learned anything since I’ve been here.” It was my turn so I was honest. I said I haven’t learned anything since being here. The therapist looked at me and said there must be something that I must have learned and I responded no. She then asked with a tone in her voice, “Then why are you in this program?” I looked at her and said, “Good question, why don’t you go call the neurologist that sent me here because I have no clue and ask him.” I sincerely meant no disrespect but I really hadn't learned anything. I was just as confused as to why I was there as they seemed to be. In my discharge summary papers, it says that I was not being invested in the program and I didn't learn anything due to my "lack of effort".
The second event that stands out is the day the occupational therapist said we were going to play volleyball. Playing volleyball would be a fun way of distracting one from the pain that they were in. Knowing the condition that my shoulder blades were in, I 100% refused to play. I could tell the therapist was getting aggravated with me because I refused to play; quite frankly though, I could care less how the therapist felt. I knew my body and I knew there was something very wrong with my shoulder blades. I knew if I played volleyball I would make my situation worse. Again in my discharge papers, the clinic wrote I had a, "lack of effort" and this time they put I was unwilling to get past my pain and participate in a fun activity. Looking back, I should have played volleyball and instead of using my arms to volley the ball, I should have used my years of soccer training and used my legs; now that would have been funny.
One of the biggest damages I suffered from this pain clinic was mentally. I met with a panel of psychiatric people daily on a one on one basis (as did the rest of the participants). They asked me why I kept saying, “I was fine” when they would ask how I was doing. I told them they are teaching mixed messages. If I were to answer honestly, it would be seen as a complaining behavior. So I resorted to saying fine because I wasn’t good but I wasn’t bad. They then told me to tell them how I honestly felt so I did. I told them I hurt like hell and my shoulder blades were killing me and no one seems to care. They then told me there was nothing wrong with them. I then proceeded to pop my shoulder blades out of place and I looked at the individuals around the table and said, “If one of you at this table is able to do what I am doing with my shoulder blades, then fine there is nothing wrong.” I waited a minute as they all looked at me. I then said, “Seeing as none of you can, then there is an obvious problem.” I was marked down for not cooperating. All I did was spoke the truth and told them how I was honestly feeling.
Fridays were family days. On one Friday, my parents skipped family day to plant themselves at the orthopedic Dr. S’s office. At that appointment my parents were brutally honest and told him all that was going on at this pain clinic. They told him the pain clinic felt that we should stop seeking shoulder blade treatment and that they completely disregarded his advice. Dr. S was none to happy and made it very clear to my parents that unfortunately his job requires him to tell people when to stop seeking medical treatment. In my case, he had 2 suggestions. One: come back in 3 years when technology advances or two, go to Kentucky to see Dr. B the “Scapular Guru.” He made it very clear that HE is the MD and that his instructions far overruled the pain clinic. THANK GOD I had someone who believed me and was trying to help me.
Needless to say, my mom and dad updated the pain clinic on Dr. S’s recommendation.
Now things REALLY get crazy…
August 15, 2007 my mom dropped me off at the pain clinic. It was my last day before “graduating” the program. At lunchtime I was pulled to the side by my nurse and was informed that I have been released from the program and that I should call my mom to have her come pick me up. My stunned mother came to pick me up. Before we would leave, she wanted to talk to the director and my head nurse. My mom and I went into the director's office and sat down to hear the explanations. The director started to blame my lack of success in the program was due to my attitude and unwillingness to try. My jaw dropped. I was stunned. I was furious. I was downright insulted. Anyone that has known me in all my life up till now knew I was a very shy, hard working, get along girl. I couldn't sit there listening to this woman bash my character. I got up, looked at the director and my nurse and said, "This is bulls*&#" I then left the room and I somehow managed not to slam the door shut. Instead it was a nice quiet click.
My mother on the other hand stayed in the room. She says, her "mama bear claws" grew that day. The director and nurse studied my mom to see what her reaction would be. Would she get up and leave? Would she scream? Would she run after me? Nope. That's not my mom's style. She sat there and met their eyes. She validated my character and told them they were wrong. My mom has worked for a hospital for a long time. She told them, "The reason you are dismissing her today and not allowing her to complete the program, is because she is not a success story for your program. Your statistics will be affected if she is marked down as a failure. It looks better for you, if she just leaves" Now it was their turn to be stunned. Silence.
They handed my mom the paperwork and we went back to the hotel. While going through the discharge papers, we came across the line that stated, “PT unavailable for dismissal review due to the abruptness of HER decision to leave the program.” WHAT THE HECK?!? They dismissed me!! I had one day left till completion. If I didn’t complete it my insurance wouldn’t pay for it. My mom took charge and told me grab my stuff we are going back. Yikes was I nervous!
The reality of the situation as we were walking up to the doors got a hold of my mom. Yikes, now she was nervous! I took her by the hand and said, “Come on mom, let’s go have a little fun.” So hand in hand we entered the building. The director heard of our being there and fled the department. My mom ordered me to go plant myself in the next class and boy did I make that teacher uncomfortable when she walked in and saw me there. My mom in the meantime had my nurse rewrite the discharge papers to adequately depict the TRUTH of what had occurred. My mom says the nurse seemed to be acting very nervous around her. However, the funny part is, anybody that knows my mom couldn't picture her being intimidating in the least. Just shows how screwed up this whole situation became.
The nurse came into the classroom to get me. My mom and I left that building and never looked back. This was the lowest point of my life mentally. I went to this program with high hopes of finding a diagnosis. I did not expect to have the physical torture to my shoulder blades on a daily basis; but more than that, I did not expect the mental mind games that would come from being in that program. My mom insists that I suffer from PTSD from my time spent up there. You know, it sounds funny but I think there is an element of truth. Ever since that time, it has been harder for me to be honest with people when they ask how I am doing. I oftentimes find myself minimizing how I am really feeling. This program made me doubt myself. To this day I can hear the skepticism in their voices and that is not good. My experience has made it hard for me to trust a new doctor.
It scares me to think what condition my shoulders would be in today if I had followed the suggestions of the pain clinic and not the orthopedic. The pain clinic was soooooooo wrong.
Next stop is driving to Kentucky to meet with the "Scapular Guru" and finally get an answer....