Yes I did. Fucking too. I said fucking, which is VERY rare (except in my head). Now before you start thinking this isn’t a big deal, I don’t swear a lot. Grew up Catholic and still won’t swear around my parents. I am also patient – to a fault (my ex is an alcoholic and we were together 12ish years, I waited until my bones were dissolved and almost unsavable before going to the surgeon, I didn’t get loud enough with my knee surgeon, I can go on). It has to stop. One has to be realistically patient, but there are times a full on fucking tantrum is not only acceptable, but needed. Here is why, and it will not include the story of today since I am still with that doctor.
Bad Record Keeping
This is huge. I dare you to go get your medical records. Do it! You won’t get the results you expect, especially if your physician uses electronic record keeping. I experienced this MULTIPLE times in Georgia, and with one of the “best in the state”. The highlight of it was when I was injured and had knee surgery. The surgery didn’t have the expected positive outcome, and I needed longer opiate care. My surgeon called and spoke with this doctor every month, and sent written letters. I also was in there – specifically to document the bad knee and that this wasn’t RA related! She did not keep the documentation on the opiates, so when the pharmacy called about the prescription – she claimed she had no clue what was going on. Now, I was in the week before SPECIFICALLY for this issue and documentation. My knee documentation was in there though right? Nope. There were a few things, but not the majority of the issues. When I got the call from the pharmacy, I even brought them AND this doctor the documentation she was lacking (from the surgeon), but she refused to take it! I was livid, so I got a copy of ALL my medical records and fired her. This is why we are being targeted by the DEA folks! My doctor’s lack of record keeping could have resulted in something very serious for me, and I know I was not the only one in that boat. Thankfully, I kept records and now I keep my own medical as well. I get copies of everything before I leave the office.
Too Many Patients to Care
Yes, most doctors are good people who truly care about their patients, but not in an “I know you as a neighbor and human” care. I know this sounds mean, but when your doctor has so many patients, it is impossible for them to deliver that gold standard of care. The practice becomes more about numbers than people. Wait times to get into doctors that only see you for 15 minutes are atrocious. Generally, you can get a thorough check on your first visit, but after that – nada. You become very numerical. Ever have a physician see you get worse, yet keep you on the same treatment for over a year? I had one that would talk about switching things around for over a year, but again never document anything. When I asked the office staff or a nurse, the usual response was “let’s wait until the next time I see her”. I actually got to the point I stopped ordering Remicade, because the drug was no longer working and I wasn’t paying that much for nothing. When I did that, the doctor’s office ordered it without my authorization and it was charged to my card. Needless to say, that was also stopped immediately after a tantrum with both Aetna and their office. That did, however; finally get her to switch me to Actemra. She had so many patients that the average wait was 2.5 hours to even get in a room, so the documentation was something that never happened. That causes my next issue.
Most doctors are trained without the current research, and most of the symptoms associated with autoimmune diseases are still scoffed at. We are the “too sick, but not sick enough” to matter in society. We don’t look sick (most of us), and we aren’t going to necessarily going to die soon. I truly believe a lot of our doctors buy in to this mentality. Many rheumatologists don’t consider autoimmune arthritis potentially fatal, and others don’t even recognize certain organ involvement with ones like RA. (Despite the extensive documentation.)
I am always shocked at my doctors reactions as I tell them my symptoms. Every single one seems utterly surprised that I have the issues I do. Surely, I am not the only person with dissolved bones, organ involvement, muscle seizures, etc. I cannot be the worst or even close! Judging by the groups on social media, there are many more like me! So why the shock and awe every time they see an MRI or x-ray? Because they don’t believe we hurt or feel THAT bad. The doctors have marginalized our symptoms and are treating only the squeaky wheels. So time to be a fucking squeaky ass wheel and unleash some “bite-chas”! I stole the “bite-chas” from an awesome friend!
Tantrums Can Be OKAY
While I do encourage you to be patient and always use kindness (I did not personally insult anyone today), there are definitely times you need to let that dragon out. We are also allowing them to get away with these things otherwise. No one wants to be angry, heck it uses MORE spoons than I get in a month – but I am done being nice. I am done waiting until something is broken beyond repair before I push to get it fixed. I am just done with people screwing up my health. I always wonder if I had started Actemra earlier, and at the right dose (another issue with this doctor), if I could have avoided some surgeries. I wonder if I wouldn’t have lost so many knuckles had I gone to my hand surgeon sooner. (Best hand surgeon EVER actually.) This also means I need to get my undiagnosed, diagnosed, my knee looked at, my back xrayed, and my feet xrayed. So this will be a “hear me roar” year for all these doctors involved. I somehow sense several tantrums and some “difficult patient” labels. Bring it. This may not be the last time I swear at a doctor’s office.