Long and Exhausting Update

I really suck at posting weekly like I used to. Lots of updates from various doctors’ appointments.

Rheumatologist: I was able to get him to increase my Plaquenil to 200mg twice daily instead of once. We talked about increasing my Methotrexate and we agreed to give it a few more weeks to “settle in” my system (since I had that period of time off of it), and if I didn’t think the added dose of Plaquenil and more time on the Metho helped, he would increase me to the max. Big surprise that I don’t feel like the combo I’m on is ‘doing its job’. I have to remember to call him tomorrow and let him know so I can start the new dosage this week. Oh, and AGAIN we had the chemotherapy talk; initiated by him. I swear to god this guy has some Dory-like short term memory issues. He’s so wishy washy on the “issue”; annoying.

Neurologist: FINALLY got an appointment with my doctor at Duke. Well, his P.A. at least. She’s super awesome. I explained the accident, the Post-Concussion Syndrome diagnosis I got from my PCP, and the symptoms that won’t seem to go away. One reason I like her so much, she’s thorough. We went through each of my medications and the dosages. She did a neuro exam, asked me a ton of questions; thank god. Her thoughts on the situation where that A.) my PCS should be gone or have lessened by now, B.) the dosage of Propranolol I was previously put on (by my M.D. at the practice) was too low and she wanted to increase it to see if it helped with the headaches, and C.) that the Chantix was the culprit for my irritability and unusually short behavior. We made a few ‘game plans’ to see which worked best with me and in conjunction with my existing meds. I stopped taking the Chantix at her recommendation, and she was right about its lovely side effects. I have to call her tomorrow also, about the Propranolol, it may need to be replaced with another category medication.

Hepatologist: Uh, yeahhhh, I didn’t go to my appointment because I wasn’t in the mood to be lectured about cancelling my colonoscopy and how it’s important because of my family history and blah blah blah blah. I’ll make an appointment when my liver starts to fuck up again.

PCP: Routine visit about meds. We updated the Amitriptyline from 50mg to 75mg, upped the Wellbutrin from 150mg to 300mg (my anxiety has been spiking lately), decreased my Ativan dosage for this month (part of my tapering off), and was [at my request] put back on 20mg Lasik and Metolazone as a “booster”. I was on 40mg of Lasik for a few months prior and it did nothing for my edema. My dad has edema also and takes this ‘combo’ and told me it really worked well for him, so I gave it a shot. O.M.G. he was not kidding; I woke up after having it in my system for 24 hours and for the first time in years, my hands weren’t swollen, or my feet; I was so happy. That feeling lasted me a whole 2 days. Go fucking figure.

PCP: Appointment number 2 within a week. Not a scheduled appointment, and not with my beloved doctor; she wasn’t working. I was feeling super lightheaded, I got dizzy and nauseous any time I bent down or crouched, then stood up, and I was drinking water non-stop (I’m talking 7 24oz bottles) yet didn’t pee as much as I thought I would. I’ve never had vertigo, so I assumed it may have been a reaction to all the med changes. The P.A. I saw, suspected that it was the Lasik/ Metolazone combo, and she told me to stop taking it and eat salty foods (which I hate) to restore depleted sodium. She wanted me to do some lab work to check out what was going on. No big deal, got the labs done and didn’t really think about them.

Fast forward a day, another P.A., one I’ve never spoken to or met, calls me and asks why I hadn’t come in for a follow up…? Huh? Why would I? I guess the P.A. I saw was supposed to have called and spoken to me about the lab work that came back. Everyone knows that when you need to have your lab results called in to you, it’s never good news. Yeahhhhh, that lab work had more issues than I’ve ever seen; like ever. Not good. She said my kidneys weren’t functioning properly and that I needed to go to the Emergency Room to get IV drips of saline and sodium since I was dehydrated. I drank like a camel that day, how the hell was I dehydrated? Then she starts telling me about my white blood cell and neutrophil count being high, I told her it always was since I have an autoimmune disorder. Ohhhhh, she had no idea because she doesn’t bother to look at my chart. Asks me if it’s possible that I contracted some virus, I said probably since I’m on immunosuppressants. Ohhhhh, she didn’t know that either, because she didn’t look at my chart. I let her ramble on about the lab results and told her that since I’ve been off those meds for s little more than 24 hours, I wasn’t going to the hospital. Blah blah blah, she tells me I’m on “E.D. watch” [whatever the fuck that is] and tells me to go if I notice any signs of heart attack or stroke but come back first thing tomorrow morning and redo the labs. Yeahhhh, I didn’t go. I’m getting them done tomorrow morning, so we shall see what happens.

It’s been a super fun and exciting two weeks for me!


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