That’s (My) Life

I have been fighting a war in the area of pain management since March 2014 when I was told by a Physician’s Assistant, “It’s all in your head” regarding my pain condition and she subsequently refused to adequately treat my pain. I was so caught off guard by her statement, I was also so exasperated from the amount of pain I had been in for several weeks straight and I was terrified of not only continuing to live in pain but even more so losing mobility and the ability to care for myself and my dogs. I responded to her statement with a statement with, “That’s f-ing ridiculous.” Except I actually said the curse word, which was completely out of character for me as I absolutely don’t curse. But that’s how absolutely absurd the situation was, that a foreign and foul word found it’s way into my mouth as though it were the correct sentiment. I didn’t raise my voice, yell or even spit it out venomously. I just stated it flatly.

And it probably wouldn’t have been an issue except that when I contacted the patient care advocate at that clinic, I felt I should include the full story so I wouldn’t be seen as trying to cover anything up. I asked the advocate for assistance in getting in touch with my doctor prior to my next appointment one full month away so I would be able to receive adequate pain relief. What happened instead was my message got passed off to the practice director and he sat on my message for the full month. Then, the day before my appointment with my regular doctor, he decided to kick me out of the practice for cursing at the staff, even though that wasn’t one of the rules which I had signed agreeing I would adhere to in my patient agreement. Not that I don’t think it’s important to maintain civility. I do however feel as though in a civilized society there is room for understanding as well as providing people with warnings if there are things which one side feels is an issue and needs to be addressed rather than essentially creating an unwritten and/or unstated zero tolerance policy. I think zero tolerance policies are ridiculously militant and don’t belong in any setting which should be focused on the care and well being of patrons and residents.

In addition to the practice director waiting until the day prior to my appointment to decide to boot me from the clinic, he also waited until one week after my scheduled appointment to actually send me the letter. I didn’t find out about the decision until I arrived for my appointment, only to find out that I wasn’t allowed to see the doctor, I wasn’t allowed to have any of my prescriptions refilled inclusive of controlled medications which my body was dependent on to help control my pain and one to give me enough energy to make it through the day, as well as medication to help me continue to sleep regularly, without which I suffer from extreme insomnia. I was also told the only assistance I would be provided by that clinic would be if I ended up in the hospital and that I could have access to my records only if I made the request to have them sent to my future pain management clinic within one month of the date of his letter, which was dated the day prior to when my appointment was supposed to have been. So, I had been abandoned as a patient and it was a matter of time before issues of criminal negligence would be able to be documented. The practice director was well aware that it would take several months before I would be able to get an appointment as a new patient at another pain management clinic. Physicians are required to maintain continuity of care until a patient is in the care of another physician. And by in the care of, I mean being seen by. That doesn’t mean just has an appointment scheduled, it means that the patient must have been seen by a new physician and accepted as a patient for treatment. Until then, the original physician must continue to provide prescription refills, make sure that a patient is stable, provide any emergency coordination and cannot dismiss a patient completely for any reason whatsoever until a new physician is in place. There’s a reason they adhere to a Code of Ethics; one which begins with, “First Do No Harm.”! Even prisoners are treated better that I was treated.

I attempted to appeal the dismissal decision at the recommendation of my pain management physician, who apparently had no idea I had been kicked out per a discussion between him and my primary care physician. Unfortunately though, my appeal fell on deaf ears and despite sending the letters registered, return receipt, I didn’t receive any response. I was forced to wait for the first available appointment at a new pain management clinic four months later in July. Thankfully though, my primary care physician spoke with my previous pain management physician and he advised that there wasn’t any reason I couldn’t be returned to my previous dose of pain medications as long as she monitored me. So, before too long I was finally back to happily managed pain levels, and subsequently back on my road to further health recovery.

July finally came and I attended my psychiatric evaluation the day prior to my first appointment with my new pain management physician. I passed my evaluation and was approved for treatment without any additional therapeutic requirements. The day of my first doctor’s appointment was a long one. I ended up being at the doctor’s office for four hours, which is incredibly exhausting for me, a person with Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS), chronic Epstein-Barr virus (C-EBV) and Fibromyalgia (FMA) especially since I had already been out of the house the previous day and hadn’t been afforded the days home necessary to recover. I was seen first by a nurse, then by a resident and finally the doctor came in to join the resident. The atmosphere had been pleasant up until the doctor entered the room. Immediately the tone changed and he was confrontational. He pulled his chair directly in front of me and stared me down asking why I had been kicked out of my previous pain management clinic. I told him the story from beginning to end. He continued to stare me down and didn’t offer any comment or any sort of pleasant expression. Finally he moved on. He didn’t instill the least bit of confidence in me or provide me with any reason to believe he wanted to create a working physician-patient relationship. He seemed much more focused on dictating whatever he decided would be the plan and not taking into consideration anything I had to share. I was not impressed in the slightest. I tried very hard to learn anything about what he was thinking, planning,  from a logic standpoint, but he refused to elaborate on anything or share any details of  a possible treatment plan or even an understanding that treatment should be a cooperative effort between physician and patient.

I left feeling very dismayed, but figured I would just have to go through the motions, keep a journal of my symptoms and reactions to his treatment plan and report back. And I also figured I could hope for the best in everything. Things didn’t go well. But, I had kept my journal, and I had my literature with me when I returned for my follow-up appointment with a physician’s assistant. Things didn’t go very well. It seemed as though the doctor had left explicit instructions in my file to continue to taper me off my medication; it didn’t matter what my reactions were. There was no rhyme or reason to it. I had been trying to guess as to why he might have been taking me off of the medication. I thought perhaps the DEA had dictated that all non-cancer patients should be removed from specific medications, and that was why he was doing this to me.  But the nurse’s comments didn’t back up that thought. It really seems as though I’m being punished for having been kicked out of another pain management clinic. This is completely insane to think that first I get kicked out for saying one single curse word. And now I am being tortured for saying that curse word. I can find studies which show that it’s actually beneficial for pain patients to swear, especially those who are less likely to swear. I can also find writings from prison administrators talking about their policies for handling cursing and using a three strikes policy. They are all smart enough to recognize that zero tolerance is ridiculous. But for some reason, medical practices, places which are supposed to be dedicated to caring for people, are turning into torture centers. They are places which exhibit the most abhorrent behavior. And that behavior isn’t coming from the patients, but from the administrators. They are the ones who are treating patients as though they are the foulest criminals, the lowest form of scum on the earth. I can’t understand why anyone would feel a need to punish any creature this way. It’s absolutely sick, twisted and it really makes me feel as though someone doing this to another being is mentally ill. Especially when the ones doing these things know full well the physical and mental ramifications to their subject of torture. This treatment is amplified as there are other conditions which perpetuate the pain and other symptoms. It’s completely inhumane.

Anyway, before I ramble for another year, I sent the following letter to the practice director who is also the patient care advocate at my current pain management clinic.

I need help. I’m very frustrated and scared. My pain continues to increase since becoming a patient at EVMS Pain Management. I lose more and more of my ability to function. I feel as though all of the progress which I have made over the past many years with the help of my other physicians is being jeopardized. I fear losing the ability to care for myself on a daily basis including such things as showering, feeding myself, grocery shopping, driving and walking my dogs.

I have been focusing on doing what is best for my health for the last fifteen years and I have been working as a team with my healthcare professionals. I have been following proper sleep hygiene. I have been practicing good habits in managing my mental health inclusive of maintaining a positive attitude, doing my best to minimize and mitigate stress, meditating and managing symptoms which might seem otherwise unmanageable through mind techniques. I have been maintaining a healthy diet. I have been continuing a regular exercise routine, which at times seemed close to impossible for somebody who could barely walk or stand. I have been scheduling and attending routine wellness appointments with all of my doctors and specialists. And I have been continuing to follow the plans which I have painstakingly worked out and coordinated with my specialists to ensure the best results and achieve the most balanced health possible for me with my multiple chronic illnesses and associated symptoms.

At my weakest I was so exhausted that I was unable to walk, unable to hold myself up in a seated position, unable to string two words together to convey a coherent thought to speak. My vision turned to black and white and I could hear only static. I went for years without being able to sleep. The most I slept an entire night was six hours. I generally slept no more than twenty minutes at a time and waking every few minutes throughout the night. I was finally able to sleep when my doctor prescribed GHB, a substance sometimes misused as a date rape drug. I would take my first dose which allowed me to sleep for two and a half hours. Then I would take a second dose and sleep another two and a half hours and that was it for the night.

As recently as a year and a half ago I was in a state of relapse. Every time I lose homeostasis, it takes a significant amount of time to rebuild my strength and independence. I had to choose which activities I could complete on a daily basis, otherwise I would run out of energy and wouldn’t be able to do essential things like fix a meal, take the dogs outside, and dress myself. I struggled to do things such as pay bills online, talk on the phone with family, vacuum and do a load of laundry. I didn’t have enough energy to shower daily. It was necessary for me to take several naps throughout the day in order to gather enough energy to make it through the day. I slipped into a depression. I have since been able to pull myself back out of it without the use of anti-depressants and have also been slowly regaining my energy but I am still mostly home bound.

When I came to EVMS pain management I was being prescribed 100 mcg/h of Fentanyl every 48 hours and 15 mg oxycodone as needed for breakthrough pain by my primary care physician. I felt as though my pain was sufficiently managed. I was also quite satisfied as this was the only medication which was effective in treating my pain. Also, as far as I am aware, I had tried everything else available. However, my new doctor, Dr. Antonio Quidgley-Nevares, told me he was taking me off the medication I was on for the following reasons. He stated that I was over-medicated. He said the basis for this belief was because he said my pupils were dilated. He also believed I had stated that I had issues with memory, concentration and thinking and that these issues had increased since being on the medication. I advised him that I hadn’t stated any such thing and in fact any issues I had experienced previously had gotten better since using the current medication.

He eventually conceded that perhaps he had misheard me. He also stated that the medication is for cancer patients. When I asked him what the difference was in cancer patients his response was, “degenerative tissue and bone loss.” I knew that the manufacturer’s indications were not restricted to cancer patients, but I certainly wasn’t going to be argumentative. I was expecting an intelligent, rational discussion in which my best interests were at heart. But I felt as though my new Dr. had been confrontational from the get-go and he was determined to take me off the only medication which had ever helped. I was really trying to track with him. So I asked him if he had concerns about a hyper-algesia effect. He responded, “Something like that” however he refused to elaborate. I realized I wasn’t in a situation where I was going to be treated like an equal and I didn’t have any options but to follow his orders and report back. I asked him how long it would take before the pain would decrease. He said two to four weeks and then I would return for an appointment with the patient assistant in five weeks for re-evaluation.

I wanted him to be right. It would be great if I didn’t need to be on any pain medication at all. But I had to come to terms with realizing that that wasn’t the case. I later learned from a few sources that if I were over-medicated on the opioid pain medications then my pupils would be constricted, not dilated. That’s not something someone in medicine, much less a specialty that deals with opioids on a regular basis could get mixed up. Or if so, then I’d seriously question their competency as a whole. I also fully realized that I hadn’t exhibited a single symptom of hyper-algesia. I knew this because it had been a concern of mine the entire time I have been on opioids. I have routinely questioned my previous doctor about it and am always asking myself if it is a possibility. I’ve already been titrated off of Fentanyl previously as well and I can assure everyone that my pain did not decrease and it certainly didn’t go away. Obviously, if it had I wouldn’t be here.

Regardless, I followed orders. I reduced the dosage of Fentanyl and didn’t take any breakthrough medication. And I did my best to think positively and keep a stiff upper-lip. I kept a record of how my day to day life was being affected, both for myself and to share with my physician when I returned if things hadn’t improved. When I returned for my appointment my pain had increased, my sleep was still decreased, definitely nothing that could be considered an improvement and I was armed with my notes and hoping that common sense would prevail.

I advised the Physician’s Assistant, Antoinette, that my pain had increased since my dosage had been reduced and that subsequently it had negatively affected my quality of life. I shared my journal notes with her and told her about my concerns over the doctor’s reasoning for taking me off the medication, specifically the mix-up regarding the dilated versus constricted pupils. She advised me that the doctor’s orders were to continue to reduce my medication, but she would consult with him while I went to get another urine test done.

When we both returned to the exam room Antoinette told me that the doctor said I was being taken off of my medication because of opioid induced hyper-algesia. She said he told her his reasoning was because my pain increased with stress. I responded that everyone’s pain increases with stress and that has nothing to do with a response to medication. I also said that when I asked him specifically if his reasoning for taking me off my medication was hyper-algesia his exact response to me was, “something like that” and he wouldn’t elaborate. She told me that the doctor stated that I had been advised at length about how he felt I was experiencing an hyper-algesia reaction, why he thought that, what hyper-algesia is, and what the plan was. I told her that I was the one who had asked specifically about hyper-algesia, and once again reiterated the exact quote he responded to me with of, “something like that” and said nothing more on the subject; that was the entire discussion on it. She asked if the resident had said anything and I informed her that the entire time the doctor was in the exam room the resident kept his mouth shut.

Antoinette said that the doctor told her that my pain increased when my dosage increased. I told her I hadn’t even discussed that with him, but it also wasn’t true. She went to talk to him again on my behalf. But the only response I received was when the nurse returned with a look of sincere empathy on her face. She informed me that my medication had been reduced again effective immediately per the doctor’s orders. She also told me she was told to schedule me for a follow-up appointment in four months.

I’d love for the truth to be that I’m experiencing an hyper-algesia effect and that as my medication is reduced my pain eventually reduces too. It would be wonderful to not need to be on any pain medication. Or at the very least not need to be on such an expensive medication. I’ve been in the Medicare doughnut hole since April. It’s not particularly fun spending close to $400 on Fentanyl alone. And when the doctor has me use two different patches, it’s substantially more expensive. But at this point, the cost is the least of my concerns. My ability to care for myself and my dogs is of the utmost concern. My pain is increasing, not decreasing, and all of my other symptoms are slowly creeping up. I am not a problem patient. I was a highly respected and loved professional architect prior to having to go on disability due to chronic illness. I have never smoked. I have never been drunk. I haven’t even had a cup of coffee in my life. I’m not someone who picks up addictive behaviors. I’m the over-achiever geek girl whom everyone’s parents, grandparents and pets love. Please help.

I understand that this is incredibly long. I felt that it was important to include enough of my history to illustrate how imperative it is that the best decisions be made for my health expeditiously. Of course, I think that’s important for everybody, not just me. I feel as though it is important to have a good, trusting patient-physician relationship. I just don’t know how I can trust this doctor. This is my health, not something which can be taken for granted. What would you do if I were your sister or your best friend? What am I supposed to do when my doctor is jeopardizing my health while I struggle to hold on?

My Primary Care Physician, Dr. Phaik Obermeyer, is available to speak with you on my behalf. She can be reached at (757) 627-6220. I’d greatly appreciate your close attention to this matter. Please advise if you have any questions. I’d greatly appreciate your close attention to this matter.

Sincerely,

Alana Glaves

I sent my letter as an email on August 21st, 2014 at 11:10 PM. I received the following response the next morning at 10:09 AM.

Dear Ms. Glaves:

I appreciate you taking the time to communicate with me about your health concerns. Please know that I, Dr. Quidgley and the remaining PM&R staff want to provide you with the best care and it is evident that Dr. Quidgley is doing so.

As the Practice Manager, I will not and cannot dictate how a doctor practice medicine if it is based on medically evidenced-based care and according to my review this is what Dr. Quidgley is offering you. I recommend that you continue to following his recommendations; however, if you feel that the care we are providing is not in your best interest, I have enclosed other pain medicine providers in the area that you may want seek medical health and advice.

I wish you the best.

Sincerely,

Tony Crisp

Needless to say, I was disappointed.