Doctors and drama

I'm not exactly sure where to start with all the doctor drama... Until May 2004 I had no diagnosis, and no one would help me. I found the doctors at The Chiari Institute through WACMA and mailed my MRIs to them to be viewed. Within two weeks I got a phone call asking if I could be in NY in two weeks, they could help me! For the first time in the thirteen years I'd been having symptoms I had a diagnosis, doctors treating me with compassion, and hope I could find relief. The neurologist and neurosurgeon felt I was not quite symptomatic enough for the corrective brain surgery, so they recommended I go home and find a very good pain management specialist and knowledgeable neurologist. I was back in November for the decompression surgery after I gotten to the point of being unable to eat, sleep, or control my pain. I was down to 105lbs (I am 5'4"), and was unable to digest most solid food by the time I made it to surgery.
When I returned home from my May appointment, I found a young doctor who happened to be a neurologist/pain management specialist/geneticist. He was perfect! He was compassionate, honest, kind, knowledgeable, and didn't make me feel like a guinea pig. I stayed with this doctor for almost seven years - until this past February. He had put me on a very strong, twenty-four hour a day narcotic fourteen months prior due to a spinal fracture with nerve root impingement. Starting last summer I asked more than once to be weaned off this medication and he talked me out of it each time. Then, when I called for my new prescription in February they somehow just didn't get it ready by 5pm on Friday... I gave them a weeks notice (practice policy is forty-eight hours notice), I called Fri morning and was assured my prescription would be ready by 5pm, yet somehow when Caleb went to their office at 4pm that day it wasn't ready and they threatened him with security if he waited! I was told to find an ER when I went into withdrawal, but it wasn't an emergent situation according to their office. It was beyond disturbing the way that office treated my husband and myself. So, to make a long story short - my script wasn't available until Monday due to him not being in the office until after 5pm Friday, and I went into major narcotic withdrawal.
Two weeks later I had an appointment with this doctor. That morning I received a phone call from his office, "We were just calling to confirm your appointment to day with Dr. $#@! at 2pm. Are you coming in to discuss continuing your (medication name), or is this a follow up on your Dec. appointment?" What? Are you kidding me? I already confirmed this appointment, twice, and why should I tell you why I need to see my doctor of seven years? My husband wanted to go with me, and I am grateful he did. I thought he would be apologetic, give me some excuse, and try to move on- I was SO wrong. This man was rude, mean, and completely out of line. I can't go into all of it now, but for thirty minutes he was saying things like: "expecting too much of his office staff", that I didn't "look sick to them", and he was "the only doctor in the office that day, and was busy covering for everyone else." He then referred to a "letter you're going to receive in the mail with referrals," at which point my husband asked him if was discharging me as a patient. This doctor couldn't even look me in the eye and tell me he was discharging me! I was dumbfounded, speechless, hurt, and feeling abandoned. The worst part came after we left the office and my husband says, "I am 99% sure he was in the office that day. While I was waiting I saw him, but didn't realize who it was because he looks so different now." This broke my heart. . . the doctor I've trusted more than any other doctor ever had just knowingly allowed this to happen. I never did receive that discharge letter.
The next day I met with my new Rheumatologist and she agreed to take care of my pain needs for now, and continue to work on the rest of me. I started seeing her in December and LOVED her! She was thorough, knowledgeable about my disorders, and was willing to think outside the box for treatments (yoga, meditation, etc.). However, a few days before my April appointment I received a call saying she had moved to New Jersey. Yes, I said New Jersey. I did receive a discharge letter from her stating she had moved to New Jersey so her husband could take an amazing job opportunity. This was frustrating, but not emotional.
Now, it is May. I have met with my amazing family practitioner, and we are finding the best neurologist, rheumatologist, and occupational therapist we can find. For now I am choosing not to continue any twenty-four hour narcotics, I really dislike medications/injections, so we're going to hold off in pain management:)
It amazes sometimes how callus and unsympathetic people can be, especially in the medical community. I am still hurt by this doctor/his office's actions, lack of remorse, and blatant disregard for my well being. For a chronically ill patient there are times I am literally relying on the mercy of my doctor, and that is hard to except.