Thank you for stopping by today! The post you are about to read (hopefully 😊) has been jumbling around in my thoughts for a while now. The problem is that I have so much emotional baggage tied to it that my logical mind is having trouble just ‘spitting it out’. If you are chronically ill, this post will likely resonate somewhere within your own past experiences. If you are not chronically ill, allow me to explain. The majority of chronically ill people have a doctor or two that seem to follow no ethical code of conduct. They speak to us in unthinkable ways, provide advice that is completely archaic, and it doesn’t stop there, the list is limitless. If you’re thinking well just move on to another, well, that isn’t always entirely possible. Some people live in small towns, some people must go to the doctors provided by their insurance, and some people just don’t have another choice. Okay, let’s embark and I’ll to stick to the point.
When I was three, I was hit by car (it was entirely my fault…or rather the fault of the person who was supposed to be watching me while my mom ran to the store…because like I said I was three and had asked her permission to cross the street to go see some kittens (because kittens…) and she said yes). I won’t go into all the details, but I stopped breathing, they brought me back, I was in traction for weeks, it was rough. I ended up in the hospital for about six weeks, which was quit an experience for my mom as we were actually on vacation at the time. She slept in a cot by my side, monitoring the nurses and doctor’s every move. Her careful vigilance ended up saving my life. At one point a nurse came in with a syringe filled with pain meds to which my mom told her absolutely not! The dose was far too much. They argued, my mom called for anther nurse, thankfully, because my mom was correct, it would have likely killed me. After six weeks we emerged, me in a body cast, and her probably permanently traumatized, never the less it was back to business as usual. And then a few years later, while playing around with an uncle, I simply tipped over in a lawn chair, but started wailing with pain. My mom’s intuition was in full force when she heard my cry and she rushed me to the hospital. The x-ray confirmed my broken collarbone and they put me in a brace that was so old it was no longer in use (small town). After a couple weeks I was still cradling my painful bruised arm. She took me back. Another x-ray confirmed my arm was also broken. Nobody had bothered to check, despite my screaming in agony during the x-rays of my collarbone. So, then it was an arm sling and a collarbone brace. What’s my point? At a very young age I learned doctors and nurses don’t always get it right. They are not ‘all knowing’. They are human. Just because any of us graduated from any type of education doesn’t mean we learned EVERYTHING that was presented. We did our best, we all just do our best. One of the problems, as I see it, is that health care professionals are responsible for our lives, so we need to be able to trust them to make ourselves feel like we are going to be okay. It also leads us to feel incredibly frustrated when they get it wrong, probably because that frustration turns to fear for our own health and well being. Which leads me to Dr. Wonderful.
Gosh where do I start. My original MECFS diagnosing doctor back in 2014, who I thought was great, told me a few years ago, that he could no longer help me (I had no idea why then, nor do I know now). At the time I was upset, very upset actually, but I thought, as anyone would, okay I’ll just find a new Rheumatologist. However, this was not even close to being the case. It took the insurance company over a year to refer me to another rheumatologist who would see me. One of my first blog posts was actually about this very experience, two years in and I’m still going on about it. They kept referring me to UCSD, but UCSD rheumatology does not see MECFS patients, or at least they won’t see me for the illness. Finally, in 2017 they referred me to a rheumatologist willing to see me.
The first visit to this new rheumatologist had us waiting two hours to see the doctor. I’m not exaggerating; I thought my son was going to lose it. Once we got in to see the doctor, he seemed okay, definitely past retirement age, he expressed that he could not hear my voice, but he was a doctor who held the potential to help me, or at least monitor me to make sure my labs were holding steady so I was trying to give him the benefit of the doubt. He prescribed a few different things at that first visit. I had also told him I don’t take opioids, which I can still see written in my chart when they pull it up. Unfortunately, he continues to prescribe different forms of them at every visit…I keep wondering if he doesn’t realize I know they are opioids? He has requested a variety of testing, but then when anything comes up positive, like my ultrasound for osteoarthritis, he won’t explain anything about the diagnoses to me. I still don’t know if my fingers swelling and painfully popping out of joint in the night is because of arthritis. Over the past couple years, he’s also prescribed medicines with different brand names of medications I told him I had side effects from previously, to which the pharmacist has said no, do not take. He has told me to take Norco and that I would feel like Ginger Rogers (she was a singer, dancer, actress), he has asked me if I could “just take more pills”, he has refused to explain my labs (for years now), he has told me I shouldn’t be looking at my labs because I don’t have a medical degree. Additionally, when I bring my labs in, he says he cannot read my lab print outs because “he doesn’t have the right glasses”, he claims he cannot hear me (I’m still not certain if this is just to keep me from asking questions), and I have to speak to either the nurse or my bf and they relay what I’m saying. He is not providing care, he won’t explain ANYTHING, he just writes prescriptions. When I first got sick my ANA results were negative, now they seem to be getting worse, yet he tells me they are basically negative. No, they are red, and positive and homogenous and nucleolar. And if I have lupus shouldn’t we be proactively treating it?
An ANA test detects antinuclear antibodies (ANA) in your blood. Your immune system normally makes antibodies to help you fight infection. In contrast, antinuclear antibodies often attack your body’s own tissues — specifically targeting each cell’s nucleus.
If you are wondering, I have asked every other doctor what the test results mean, nobody will answer because it “isn’t [their] specialty”. My PCP, as well as a couple of other specialists, have tried repeatedly to refer me to other rheumatologists but the insurance company keeps referring me back to UCSD, even though they know they don’t see people with my illness. They did refer me to one other rheumatologist, but she refused to see me because I was “under someone else’s care”. So, to all the health care professionals who tell us to stay off google…is this a Darwinism thing? How about you provide some care, explanations of lab work, be as kind as possible, and we’ll agree to start trusting you with our healthcare. Deal?
If you are still wondering why I call him Dr. Wonderful? It’s because he’s done virtually nothing but try to prescribe me opioids. And opioids, from past experience, definitely make you feel wonderful, at first. I guess it’s a bit of an ironic joke on my end. Who knows? The dark sense of humor one develops with chronic illness knows no bounds. 😊
Where to go from here? I have an appointment with a new PCP (the last two in the practice have quit in a few years time) coming up and will explain to her what’s happening. I don’t know that we will get anywhere but my fingers are crossed. I want to close by saying two things…one) I have NOTHING against anyone else doing whatever they need to treat their pain (opioids included) and two, I try really hard not to badmouth healthcare professionals on here, and if I do express my frustration, I try to make it so nobody could ever figure out who that person is to protect their anonymity. I know we are all doing our best. I really, really do, but at some point, my emotional health has to come first. If you are wondering why I don’t report this doctor, I probably should, but I know he’s probably helping so many people out there who need pain management and can’t get it elsewhere and I would hate to interfere as I know that that’s a touchy issue right now for millions. So instead of reporting him, it’s finally bubbled over my emotional threshold to here on this page. Hoping tomorrow I’ll feel lighter for having shared. If you have any thoughts or want to offer advice or want to share your experiences, please feel free to do so. Most everything I learn about my illnesses these days comes from social media and I always welcome ideas, because some people out there actually have more informed doctors, who provide more up-to-date and compassionate care.
Wishing you the very best day you are able to have. A few more doodles. I was following along with ‘inktober’ (adding ink to my doodles) but I’ve decided that the ink part was too exhausting and was not my thing. It was detracting from the paintings, so yesterday I waved the white flag and will be resuming just doodles and watercolors. 😊