At A Loss For Words, Kind Of

Well things have been interesting the past week or so. I can’t decide if I want to cry or flip a table. Where to begin…let’s begin with what’s happened so far…

I had my follow up appointment with my back doctor this past Friday. Hands down, top 3 worst experiences I’ve had with an MD or PA. This woman, [the same one I saw last time] the one who arranged for me to have the MRI and Psych Eval, was [ ] that close from getting throat punched. Mind you, she’s a bit of a bitch with an unpleasant bedside manner to begin with, but she must have been on her period or lost a stick up her ass that day. First off, when she got in the room, she didn’t remember who I was or why I was there. Um, because I’m following up about the spinal cord stimulator like we talked about last time? I must have had a puzzled look on my face because then she starts reading off the results of my last MRI. Look lady, I know my back is messed up. I know which discs are damaged and what is wrong with them…move on. Then she says, verbatim “It says here that Dr. Idler (the back surgeon) recommended you for a spinal cord stimulator. Well, good luck with that. They almost never approve those unless you’ve had prior back surgery, which you haven’t.” Say what? It took everything in me not to flip out on this woman. She sends me to get these tests done so that I can’t do the trial and hopefully, get a permanent device placed. NOW you tell me I basically have no shot in hell of having that happen?! I asked her what I was supposed to do now. She tells me I can manage it with medications, physical therapy, and injections (basically everything I’ve already done, that hasn’t worked). I told her that I’ve done those and still in pain. So, being the lovely human being that she is, suggested that I get Cognitive Behavioral Therapy to manage the “perception of pain”. Oh. My. God. I had to bite my lip to prevent me from ripping her a new one. Then she ends the appointment with, “You can make an appointment on an as needed basis.” Um, are you not going to try and put the request into my insurance on the off chance that it gets approved? “Oh, do you want me to do that?” OMG!!!! I told her never mind, I’ll call them myself. I was livid. I sent them a message on the patient portal asking for names and numbers of the highest people at their corporate office.

Story isn’t over. Yesterday, I got a call for a super sweet lady from the practice. I can’t for the life of me think of what her position would be called, but she works with the insurance companies to get procedures and what not approved. I was surprised that she called because the wench made it seem like she wasn’t going to do anything. I told the woman exactly what happened at my appointment and she was floored. She read the notes from my visit and they said the EXACT OPPOSITE of what was said to my face. I was furious. Thank god for this woman. She went over my previous visits and results from MRIs and X-rays and told me that it’s not impossible to get approved. She apologized for that dumb wenchs’ actions and told me she would do whatever she could to make sure the procedure gets approved. Seriously, thank god for her, I was hardcore stressing out about what I was going to do if I didn’t get the surgery. Now I at least have some hope that it gets approved. Fingers crossed.

I made an appointment to see my PCP this week (appointment was today) for yet another med change. The increased Gabapentin was giving me blurry vision and making my tremors worse than they already are. The game plan is to do a quick taper of the Gabapentin and then I’m going to try Lyrica again. If this doesn’t work, then I have no clue what to do. There’s a very small selection of medications available and I’ve taken them all. Then there’s the new medication I started for the edema. It didn’t work. Took it for almost two full weeks and it did not a damn thing. Since I had to get my routine blood work done for my Rheumatologist, so my PCP added on a kidney function test. If my kidneys are ok, then she’s going to increase the dosage of the diuretic and see if that helps.

Then we went over the medication I’ve been taking for pain [Etodolac] to see if it can be increased because it doesn’t do a whole lot. Of course, I’m on the highest dosage and I’ve tried every other option. Being allergic to acetaminophen majorly limits the kind of pain medication I can take. Top that off with my refusal to take opioids and I’m once again, shit out of luck. I’m still waiting for the numb nuts at the Duke Pain Clinic to get back to me for an appointment.

I talked to her about doing some more in-depth testing to see if there’s another autoimmune disorder going on concurrently with the MCTD. It’s very common to have one autoimmune disorder and develop one or more additional disorders. She and I have looked at and brainstormed what could be causing the edema to be so bad and so persistent. It’s not my medication. Thus far, I haven’t had any lab work that indicated a secondary disorder. At this point, she’s done all she can do. So, I have to make an appointment with my Endocrinologist. I haven’t seen him in years but from what I remember he was a nice guy. Maybe he can figure out what’s going on and ‘fix’ it.

I also have referrals for an Ophthalmologist and an Audiologist. The Ophthalmologist because of the Plaquenil. It has the potential to cause irreversible damage and I was supposed to get an exam…three or so years ago and haven’t. Not a smart move on my part but I’m getting it done so that’s a positive. The Audiologist is because I’ve had trouble hearing low decibel sounds. I’m finding myself having to ask people to repeat what they say and turning the volume of the T.V. and my music up. Thought it wasn’t a big deal until I did some digging and found that 50% of those with MCTD end up with partial or complete hearing loss. Awesome right?

Four pending appointment and awaiting an approval. What an awesome way to start the month! Which coincidentally happens to be MCTD Awareness Month. Ha ha ha universe, funny but cruel joke you played.

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