Do you ever feel like used parts at your local auto wreckers instead of a whole car? I often relate to an old radiator. I have more than one dented bumper. Just because those parts get into a fix or two or age doesn’t mean they must be discarded any more than we should be. Modern medicine with its areas of specialization has turned us all into subdivided humans. Our internal organs belong here, our legs and knees, head in another direction, etc. We’re not exactly the Thanksgiving turkey to be carved up and handed out in pieces. However, it does appear that way at times. We take our bones to one doc, our private parts to a gyno, our hearts to the cardio guy/gal, and on and on it goes. How do folks without a general practitioner or an internist manage it all? I’m a retired RN and I get confused. I have been known on more than one occasion to say to the oncologist, “Should I be talking to you about my back and bottom pain or do you not want to hear it?” This is done while I am sitting in their office after a long, tiresome appointment, on a pillow I snatched off the exam table.
I have an internist, a dermatologist, an ophthalmologist, two cardiologists, an oncologist, an oncology surgeon, an orthopedic surgeon, a rheumatologist, an oncology radiologist, a pain specialist and a dentist. Whew! The only thing missing is a witch doctor and I’m sure I’ve seen a couple of those over the years posing as MD’s. Before you ask, yes, I also have a physical therapist or two and have tried acupuncture.
One of the first rules we learned in nursing school was never to refer to a patient, any patient, as their problem or diagnosis. We couldn’t go around the units saying, “What does the gallbladder in room 20 want?” Oh my. That would get a nursing student a quick visit into a supply closet where an instructor would frown and point an accusing finger as she lectured in the general direction of your guilty mouth. It happened often in the early years of training because we were ignorant, nervous and sorely in need of the basics. Usually, we learned to have a bit more sensitivity as the years of training passed and if we didn’t, it was “adios” to any dreams of nursing. Sensitivity counts in nursing as much as simple common sense and good taste. I had one poor fellow in my nursing class who got tossed out for such insensitive and ignorant moves as leaving a full bedpan on the same over the bed table with a freshly delivered meal. Wowser. Where did he grow up?
It has been my experience as the years of illness and nursing have passed by on my calendar that I am not the only patient who is rocked and thrown off guard by these many changes in medicine. I think specialization can be a wonderful advancement but it must be tempered with a good “guard at the gate,” in the form of a knowledgeable primary care physician or an internal medicine physician. If you and I don’t have one of these we are running from one doctor to another as we run into opinion after opinion that may not be their area of expertise. We wind up in a state of total confusion. None of this complicated picture has been cleared up at all since this whole furor over opioids has sprung up. We have politicians, both local and national, media outlets and insurance companies trying to put the fear of overdose into all of us by talking about subjects for which they are not qualified. Illegal use of opioids should never be confused nor does it belong in the same conversation as those given to serious pain patients. Kids or addicts who steal pharmacy drugs will snort, ingest or plunge a needle full of anything they can get their hands on. Why should millions upon millions of legitimately suffering patients be paying the price for these misguided students or low-life’s seeking a high. Let them go out and import and grow their own opium poppies and leave the legitimate pharmaceuticals alone. Worse yet, don’t let them come to the beautiful northwest coast of Oregon. Here in gorgeous Astoria, we have six legal pot shops and dozens of breweries for a county with a population of 10,000. Makes one afraid to hit the road in a car for fear of hitting the asphalt head first.
I had this opioids crisis seriously affect me last year when my PCP of fifteen years announced she would no longer be treating pain. How do you practice as a physician without treating someone in pain? I have no dog in this fight because I do not do well on opioids and always have to seek other ways of treating pain, but really? I had been getting by for years with an old headache medication which she would no longer prescribe to me. Every time I have tried any form of opioids I have to be very careful because of stomach bleeds and complications of my Sjogren’s Syndrome; sores would develop in my mouth and nose as well as my esophagus and windpipe. I hated to leave my PCP. I was very fond of her but I had no choice. I found an excellent pain clinic in Portland but not until I tried one where the doctor was a complete monkey’s “patoot.” He was all about the narcotics and treated me like an addict as soon as I walked in the door. As I walked out on him he shaped up and tried to be nice to me but it was too late. I can have a very cold heart when I’m angered and insulted and he found that out. He did give me a prescription for a specially compounded creme for my joints which I was to later discover was an “agreement” between him and the compounding pharmacy down in southern Oregon and had charged my insurance company at that time $800 for two tubes of the stuff. It’s good crème but for that cost, it should have been mixed by Dr. Albert Schweitzer himself. We’ve got to stop gouging our insurance companies like that. I switched doctors by going to my husband’s excellent internist. Both he and the caring and very bright pain specialist I now have in Portland are perplexed by this new trend among many physicians and the seriously frightening position it leaves many chronic pain patients in.
All of my specialists were in Portland but as traveling a four-hour round trip has become more and more miserable for me due to two crushed vertebra and sacroiliac joint disease, more problems are piling on with other painful and diseased joints and now cancer. Whoosh, but life can be something of a ride down an icy slope without your long johns, if you aren’t careful. As our little town grows and we get more specialists I also find many of my older doctors in Portland retiring so I am hopefully going to be able to get better and more extensive care here, near home. For instance, we have a new multi-million-dollar cancer center opening here this week. The treatment and chemo chairs are all overlooking the beautiful Columbia River.
What are we, as patients supposed to do about all this earthquake in medicine; well, hang on for one thing. The next thing we need to do is to inquire of others, search ratings online and interview new doctors to be sure they are knowledgeable and will communicate with your other physicians. I always try to be sure to ask if their computer networks talk the same language as the one at our local hospital and the other physicians I now see. If they do not, I always ask the lab and any other doctors to send reports to those other physicians involved in my care. Always ask for a copy of your visit summary and your most current lab work. If you forget to ask you can go to the medical records department of your lab or hospital where the work was drawn and request it. It’s also a good idea to follow up with any special tests you have had performed and read them for yourself. If you have any questions, ask your doctor questions on your next visit. Look up any new medications to see if you should be avoiding any other vitamins, medications or foods while you are on them. Get to have a working relationship with your local or specialty pharmacies and they will work with you. For instance, I found a compounding pharmacy to fill my “solid gold” crème just across the river in Washington state and found out she could mix anything the doctor ordered. She was able to offer me the same crème, by working with my Medicare supplement medication policy at a ridiculously lower rate than the price gouger I had used previously before my husband retired and we had to change insurance companies. First of all, the overall rates went down with her help and she dispenses it in smaller tubes and I pay $4 per month for the same crème. Work it and don’t give up. Keep good files and be your own best patient advocate.
Just because we are in pain or have more than one disease doesn’t mean we should give up or give in. There is a force within this universe some call the Force who loves you and is looking out for you. The God I trust on a daily basis leads me into interesting, surprising and remarkable situations and solutions. One day you and I will die but not before we squeeze every morsel, moment and possible layer of use out of each of these used body parts.
Of course, it should go without saying we each should have a good date book and check it often. If I’m feeling like a dead rodent in the road after a bike rally, my memory stinks. Part of it is aging but part of it is the famous fogs that every disease specialty claims, i.e. fibro fog, RA fog, chemo fog, etc. How about just feeling so lousy you don’t listen nor remember as well as you once did? Keep calm, carry on and have faith in each new day.