An update on my medications, or why I’m breaking up with my primary care doc

I haven’t done my Enbrel shot for like a month and I hate that.

Oh come on now, it’s not like this was my plan.

Earlier in the year, I developed a mucocele just to the right of the middle of my palate. I was nervous and thought I should see the dentist but clearly did not. At the beginning of May, the mucocele was still there and I developed a cyst above my upper right canine along the gum line but also so big it was up next to my nose. When it didn’t go away after a week-ish and actually was beginning to swell to the point that it was impeding my work, talking, and drinking alcohol at trivia, I decided to make an appointment with my primary care doctor. I had held enbrel already hoping for this to go away and I probably should’ve gone to the dentist in the first place, but I never thought I’d experience what I have in the last month.

He feels my face for differences between the right and left side and apparently feels nothing. He sits back and WHILE LAUGHING says “I think it’s just a pimple.” I then go into explaining that I’m 25 and I’ve had my share of pimples but this isn’t a pimple. I explain that it is affecting my job, how moving those facial muscles at all is incredibly painful. I invite him to mash my face again. He goes to town, mashing incredibly hard and even my left side is in pain and by the time he’s done he says, “Well, it clearly doesn’t hurt that bad because you’re not reacting.”

Okay, by this point I’m pretty pissed and I figure he’s already laughed at me so all bets are off the table really but I’ll still be civil. My laughing along with the comment, “Well, you’re talking to a chronic pain patient who pretty regularly sees 8s and 9s on the pain scale so that doesn’t hold as much weight as you think it does,” is met with no response. I would’ve offered to have him look in my mouth but it’s pretty obvious he thinks I am an idiot. He moves on, reassures me that it is a pimple and I’ll feel better when it comes to a head, tells me to take my enbrel, and gives me a week-long script for an antibiotic – which he is only giving because I protested because he warns me AGAINST taking since I had C-diff last year.

I walk out pissed beyond belief that I can’t even fathom what has just happened. He’s always been a bit off and seemed to dismiss a lot of what I have gone through or am going through when he sees me. While I had C-diff, he gave me ten oxycodone pills because I basically broke down in his office since I had to hold enbrel and my normal meds were not going well because of the infection – and that’s after he prescribed me something I was allergic to at first, necessitating me driving all the way back over town to pick up the script.

I make it to the car and it takes all my resolve to open the door and get in the car instead of going back in and going off on him. I sit, unable to bring myself to start the car, and just sob uncontrollably. I don’t even know what to do. I drive home, continuing to sob, and manage to stop enough to get into the apartment before going off again.

One of the worst things that happens with these diseases is when you aren’t believed – that goes double for family members and doctors. My primary care doctor thinks I’m a hypochondriac, a young girl who knows nothing about her own body or medicine. I would’ve expected something like that out of someone much older than the 30- or 40-something man that barely sees me.

I hold my enbrel, despite the incredible amounts of pain I stumble upon in the almost two weeks until I see a medical professional again – but this time it is my scheduled visit with my rheumy’s NP who is the sweetest, most caring person I’ve ever met. I know that, whatever I have going on with me, she’ll know what to do.

My appointments with her are always pleasant, no matter how much I hurt, and I always look forward to them. We sit there, like a couple of River Song clones with our big fabulous hair, and discuss my wedding plans, seeing Wicked, and how I think I’m doing right now compared to last year when I started enbrel. I talk about running and about my fitness regimen that I keep up myself now without PT. She’s so happy. I fully intend on mentioning what has gone on, but I wanted so much to have an appointment with her that wasn’t full of problems.

“So, no more infections?”

Sigh.

I go into the whole thing – what makes this worse and how nothing seems to make it better, and that I’ve been off antibiotics for almost a week. She finally looks inside my mouth to find my lovely sac o’ pus. We discuss my financial state and how without the enbrel I feel terrible – my right shoulder has just started going off, a great sign of a flare for me that only gets worse. I am to update her in a week and if this thing isn’t gone go to a dentist asap. She goes into some more detail on how bad abscesses can be and what they will do to my ability to take DMARDs for, oh, a few months if left alone to fester – or worse. Did you know abscesses can kill??? She leaves me with a hug and reassurance that I did the right thing, along with the name of the primary care doc who she and her husband both see so I can make the switch.

“Hold the enbrel until all signs of infection are gone” are not words a girl in a flare – Kathy noticed the puffy joints – want to hear.

All week I am in agony and freaking out. The right side of my face is killing me with itching, and my arms are trying to finish the job. I have essentially had my arms more or less frozen at my sides, in typing mode. I have to wear my regular bra because even thinking about the sports bras hurts to high heaven. I have a terrible time getting dressed and doing my job. When it isn’t busy, I cry while reading pretending that book is the reason. This pain won’t stop and I can’t take it anymore.

June 6th arrives with only minimal lessening in this sac that I can’t seem to stop playing with. I’m scared to death I’m going to pop it and melt or something. I make a call in the morning to the dentist office I love but haven’t been to in almost two years due to low funds. I set up an appointment for the 7th.

Judgment day arrived today. I’ve known from the beginning that this was an abscess and that I would either be missing a tooth or get a root canal. I knew it and I’ve known that was what I should do all along, but of course I didn’t. I’m there 5 minutes and the x-ray confirms what I’ve thought for a month, but didn’t follow up on because my GP made me feel like shit about myself.

Turns out, my dentists had a cancellation right after my appointment and could do the root canal right away and since I now have dental insurance I owe less than $500. In an hour and a half, my root canal was done and the most painful part was numbing up my gums. I feel fine, mouth wise now. The rest of the infection should be cleared up within a week – if it’s not I get to call for more antibiotics. So best case scenario I’ll be away from enbrel 6 weeks total – worst 7 or 8.

I plan on writing a note to my current GP about the situation and my distaste for his wanton disregard for my safety, knowledge, and experience. I just don’t know what to say exactly – “Thanks fucker, you were wrong and go fuck yourself!” seems a bit much.

This all just goes to show that we know our bodies much more than others do. When we know something is wrong, we’re generally right. Don’t silence that little voice in the back of your head, because it could end up saving your life.