We are a team, or we are supposed to be; my doctor’s and I are supposed to work together since I have so many issues. That is the theory right? If I don’t laugh I will cry right now. Now, don’t misunderstand me. I have a phenomenal Rheumatologist and Neurologist; I could not ask for two better specialists. Let me go back and start at the beginning.
In Late September of 2017, I moved back to Michigan. Prior to that I had lived in Tennessee and had a great medical team that not only worked with me and we made joint decisions, but they worked together. I had the same team for almost a decade. I was part of the decision making process, they listened to me when I came to them with concerns, and they treated my medical problems when I said something was wrong. When I moved, I had the common fear and nerves of finding a new medical team. When you have long term illnesses, finding medical professional’s that click is vital. These people become part of your life, not as dependents but as people that your life can actually depend on. They have to be people that you can trust with your deepest darkest secrets that those outside of your one or two closest confidants may not know what is happening or going on.
The first Rheumatologist I found I was not thrilled with; however, I thought maybe it was just my expectations. I am traditionally Type A. When I needed to make an unexpected trip, my primary care doctor at the time would not write any pain medication for me (this was now August of 2018 and doctor’s refused to write any pain medication in Michigan for known conditions citing a law that did not apply, and knowing that NSAIDs cause bleeding ulcers for me.) They told me that they would write an NSAID, which is Ibuprofen, Naproxen, Celebrex, or medications like that. I called my Rheumatologist asking for an increased dose of steroids which is prednisone. They would not increase the dose to what I knew I would need to handle the trip. I asked the doctor’s assistant a question. Now before I tell you this question, I want you to know this is a fact based, evidence based question. I asked it without emotion. I said, “Does Henry Ford Allegiance know that this is why patients turn to illegal and illicit narcotics? Do you know that this is why patients are commiting suicide?” The Rheumatologist called the police and stated that I was going to commit suicide. As I spoke with the very nice police officer that showed up on my doorstep, I explained that I had no intention of committing suicide. I explained the details of an autoimmune disease, what autoantibodies did, what a flare entailed, why I was asking for steroids and why I was trying to avoid high dose steroids again, and that both my primary and my rheumatologist had violated their Hippocratic Oath. His suggestion was fire the doctors. I held the same belief and did just that.
While I did go on the trip, I spent six weeks afterwards in an almost fetal position “recovering” from that trip because by doctors refused to help me. The flare resulting from this trip could have been minimized and The pain, yet the very doctors that are there to help me in theory deliberately withheld care and inflicted pain. The only good of it was that I found a new Rheumatologist that I have not only “clicked” with, but she has a better understanding of my disease and not only listens to me but works with me.
Now, we fast forward to November. I found a new Primary care doctor. I went to him because my spine has been hurting more than it has in ages. To the point I am in tears. Considering I have broken ribs and not flinched, had numerous microfractures and don’t complain I felt that I needed to see a doctor. I went to him, and was once again brushed off as a drug seeker. At this point, I am tired of Michigan primary care doctors treating me like a drug seeker. I did not ask for any of these diseases. I do not like to take anything for pain; however, there are days when tears and when flaring that you really should not have to live like this. A week later when I went to my Rheumatologist, she knew that I would not be in tears and complaining unless something were seriously wrong. She ran a series of tests and found multiple compound fractures in my spine and degenerative disc disease.
Once again, I had been treated as the worst of patients and denied care. It is ironic that my worst fears were realized. We have an opioid crisis where patients that truly need help are being abandoned. I am a firm believer in alternative therapies. Yet, there is a need for something beyond Cognitive Behavioral Therapy, aquatic therapy, or PT at times. When doctor’s automatically assume drug seeking behavior, refuse to treat you, or even with a diagnosis still refuse help; the feeling of abandonment leads patients to a feeling of hopelessness.
Having experienced first hand the abandonment and medical malpractice of multiple physicians now has been a new experience. When documented medical conditions put you at risk for one therapy yet that is all doctors offer, that is gross negligence. When assuming a patient is automatically a drug seeker, failing to follow the most basic best practices of medical care, that is medical malpractice. That is however, the quality of care offered in Michigan under the guise of combatting the opioid crisis and quality care. My quality of life can be interolerable; however, as long as state legislators and doctors are comfortable that is all that matters.
With Love,
Amy
