I am sure that most of us remember from our American history lessons, or at least from a movie or two that barbers used to be dentists. That’s right, the same guy that would cut your hair would pull your teeth. I suppose that a really productive Saturday afternoon would be: getting a haircut, a shave and a couple of rotted molars pulled. Of course that also meant getting drunk, because they would numb the pain by giving you enough whiskey to not care about the procedure.
There was a time in my life when during a given week I would have physical therapy up to three times, I would see the psychiatrist, the therapist, the pain doctor, the rheumatologist and the acupuncturist. When things were really bad with all of my fibroids, cysts and polyps, I was also seeing the OB/GYN more than the normal yearly visit as well. I was having frequent blood draws, and getting other random tests that probably still have me glowing in the dark. Some weeks were so filled with doctor’s appointments that I could not go into the office and had to do all of my work from home. I suppose what I am about to describe was my own, modern day, and considerably safer version of the barber/dentist story. Much more medical, much less Sweeney Todd.
My therapist called the problem I had developed “Doctor Fatigue”. I was getting sick of seeing doctors, and it was making me feel sicker than I actually was (was that possible?). Spending all of that time in waiting rooms, usually with people much older than me. Seeing so many walkers and wheelchairs. Becoming FourSquare Mayor of every medical building in South Orange County. The bruises and blown veins on my right arm (the only arm with accessible veins) were becoming permanent. I just could not do it anymore. I was thinking that I was ready to see a therapist just go get therapy for the therapy. So I hatched a plan. No, that plan was not to ask my hairdresser to treat my chronic illness or manage all of the root canals I had suddenly needed thanks to my first rate immune system, but something seemingly more sensible.
First, I made sure that my psychiatrist did not see any changes in the near future to my psych meds. I just asked questions about my stability and noticed that my visits with him were shorter and shorter. We were down to about eight minutes. My husband and I had a bet. We would pull into the parking lot and each pick a number, the number of minutes we thought I would be in there. The clock started from the moment I left the car. The person with the closest number got to select where we went for dinner. We ranged between six and eight minutes every time. Step one; get my general practitioner to start prescribing my psych meds. If he would do that I would not have to go in every month just to say, “yes I am fine” and pick up prescriptions. That got rid of one doctor visit.
Second, all the rheumatologist was doing was moving my arms and legs around and asking if there was any change. She was really not helping, not exploring any options for trying to figure out what was going on with me. As soon as she said “Fibromyalgia” she was done looking for anything further. Another call to my general practitioner to see if he would do regular blood tests to check my SED Rate, ANA, to see if I was still anemic and if I was getting enough sun or did I need a supplement. I also needed to be tested for some of the psych meds I was taking to make sure my liver function was not impaired. He agreed to do the blood work every six weeks. Bye bye rheumie.
How the pain doctor made his exit from my life is a long and awful story I don’t want to go into here. I lost that doctor not of my own will, but out of a total misunderstanding by an ER doctor who believed that I should not be on fentanyl for my pain, because he did not have an understanding my my diagnosis. Nor did other people in decision-making positions in my life. I was in so much pain I was along for the ride and agreed to anything that I was assured would help make me better. So, hello medical detox, goodbye narcotic pain relief and pain management.
Eventually, I was down to seeing my therapist, occasionally a specialist like my nephrologist (kidney doctor) or OB/GYN who ordered me an ablation in place of a hysterectomy. A hysterectomy, which I am now waiting for, and should have had back then.
My doctor fatigue was over. I was no longer listening to contradicting advice. I was no longer spending 70% of my life and untold amounts of money to see every kind of doctor known to man. I had streamlined my own medical care. Wasn’t I just brilliant?
I lived like this for a few years. If there was trouble, I had two options: see the general practitioner who, while a very nice and knowledgeable guy about GENERAL things, was pretty clueless about what was going on with me, or go to the ER. I spent a TON of time in the ER.
If I needed something particularly special, something I thought would be helpful for my specific conditions, I would leave a message with the nurse at my GP’s office and they would just call it in for me. They trusted me. They also started refilling a rather open ended prescription for norco. As I became more tolerant to it, the refills became more frequent. BUT, never could I get the refill more frequently than once per week, so if I flared and needed more, I just had to wait it out, or go to the ER.
Did I do the right thing? Did I solve one problem and create ten more? In retrospect, I think the latter.
About a year and a half ago I did something bold. I took a trip from my South Orange County home all the way up to UCLA and saw a rather renowned rheumatologist. The minute he saw me, he diagnosed me with EDS. It was that obvious to his trained eye. He put me back on fentanyl, he prescribed me several other medications and he gave me things to do in my life to start feeling better. He was alarmed that I had gone this long without seeing a specialist. He told me to keep getting my “breakthrough” pain meds from my GP as well as the other meds I was getting. The antidepressant I was taking was also good for pain; the mood stabilizer was good for my migraines and my peripheral neuropathy. Now here is the catch: he said he would never ever increase my fentanyl dose.
Here we are a year later, and I have learned something very valuable, and I am going to pass this lesson on to you. This past week I made my first trip back into a pain specialist’s office in nearly five years. I had researched all of the pain doctors in my general area, and trust me; in LA there are many doctors that call themselves pain specialists. The doctor I found is right up the street from me. I read every review of him I could find; I read his blog and his Facebook page. I read about every type of procedure he offers and I learned everything I could about his record with patient care. I was satisfied that I had found the right doctor for me.
He walked into the room, introduced himself to me, and then he started asking questions. He listened. He made jokes and funny comments where appropriate, and shook his head at the ridiculous things that doctors in the past had done to me. He couldn’t believe my “medical detox” story, and when he found out I was wearing the same dose of fentanyl for over a year he said, “so that’s doing nothing for you is it?”
To my surprise, he used to be my former pain doctor’s partner at the very same time I was seeing that doctor. We had probably passed in the halls! How did I miss that in my research?
He then laid out a treatment plan for me. The plan included what we were going to do that day with my medications, and what we were going to do the next time I was there (in two weeks). Then after the next two weeks we were in the “options” stage, depending on how things were working out. He was open and honest with me, he did not question my pain or anything that I told him. He believed me, he trusted me, and I trusted him. I trust him.
There may come a time when you get tired of seeing so many specialists. There may come a time when you think that if you see one more doctor you are going to have a screaming fit in the waiting room. You may find yourself getting “Doctor Fatigue”. As chronically ill patients, we do see more than our fair share of physicians, and some are better than others. When you get to this point of total frustration with all of the driving around, the waiting, the forms, the tests, that you consider “streamlining” your care, and handing the lions share of the work to one trusted physician.
Stop! Do Not Do It!
Don’t go to the barber and ask to have your tooth pulled.
Do you want your pain managed by a doctor that does not understand that you will reach tolerance of a narcotic and soon it will not do anything for you? Do you want a doctor that will spend more time doubling up on antidepressants to avoid raising your fentanyl patch just once? I found out that I was not even at a therapeutic dose of gabapentin. So, I am doing the exhausted zombie thing one goes through when starting or increasing gabapentin, and I may have to do that again in two weeks. Also added to my regimen is an additional flexaril per day (that makes it one in the morning and one at night). Needless to say, I am doing a lot of sleeping at the moment as I get used to this.
Do you want a doctor managing your psych meds that doesn’t know enough about depression that when that fateful day comes, that day the antidepressant stops working (as they all eventually do) and you are in crises, you have to spend time finding a psychiatrist to take care of the problem? You are depressed and in tears or feeling like the walking dead from this depressed state you are in, and you are frustrated and in tears because that streamlining doctor you trusted cannot help you because he is not a specialist in this area? So, you find yourself, just days before your daughter’s big sixteenth birthday party that you have been planning for months, laying on a gurney in the ER discussing which psych ward is the closest because the hospital you went to cannot admit you, they do not have a psych ward. That’s OK you decide, you are going to tough it out for your kid, you go home and start Googling doctors. Yes, very streamlined, very efficient. Smooth move, Jules.
There is a reason that doctors train in specialties. There is a reason why, when we need specialized medical services we go toTHOSE doctors, trained in THAT area to get help. There is a reason that barbers no longer pull teeth. We all know that psychiatrists are MD’s but do we see one for appendicitis? If you understand that concept, then why would you see a general practitioner for bipolar disorder? I ask myself that now, in retrospect as I interview psychopharmacologists. You see, I take so many meds, I refuse to even see a psychiatrist anymore. I do not feel comfortable with that level of specialty. I need someone with an even deeper understanding of medications. Since I already have a fantastic therapist, I am looking for a psychopharmacologist to handle my psych meds, and can see how they work in concert with my pain management program, with my autoimmune issues, my thyroid meds, etc.
The trick to streamlining your medical care is not to hand everything over to one doctor; it’s to build a team that can work together. We need our specialists. We need doctors that understand what Ehlers-Danlos Syndrome is and can treat that while another doctor is effectively treating Bipolar and another is managing pain. These doctors need to know how to work together and not get in each other’s way.
Teams of doctors all need permission to speak to one another, to share records and lab results so you are not getting redundant tests. A team of doctors should have privileges at the same hospital, or at least the doctors of similar specialties that would need to see you should there be an issue with a given chronic illness.
I am done beating myself up over this. We make the best decisions we can with the information we have on hand. We also make the best decisions we can based on our current life situation. I know myself well enough to know that had my doctor or treatment fatigue gone on much longer, I would have quit all of my treatment completely. I just chose a poor way of handling the problem. That poor way of handling the problem was still better than giving up on medical treatment entirely.
I now have the benefit of hindsight. No Jedi mind tricks, I know all of the droids lurking inside of me. I know what it is like to go without seeing the doctors that I really need for an extended period of time. Handing everything over to a doctor who is used to seeing you once a year, or at times when you are acutely ill, is not equipped to handle the intricacies of a chronically ill patient. The more I handed off to that general practitioner; warning bells should have sounded somewhere. The bells did not sound at the doctor’s office, they didn’t sound in my head, and the result was me not getting treatment that I should have been getting for a number of years.
Did I die? No. Do they know me by first name at the ER? Embarrassingly, yes. Could I have had better pain management, rheumatology, and psychiatric care over those years that would have made me more comfortable, and thus all of those around me more comfortable? Probably.
If you have ever considered doing anything like this, learn from my example. What may seem easier in the short run will be a bigger mess to clean up in the long run. I am cleaning up a mess. I am fixing a lot of broken parts of my life. It’s like I went to the barber and he pulled out all of the wrong teeth. Fortunately, most of this is fixable. As it turns out, fixable is not easy, and it does not feel very awesome, but it is possible, and that is all we can ever do: the possible.