Some stuff #lupus

I went to see my neurologist today. The ENG I had in March was normal, which means I don’t currently have any Lupus stuff in my inner ear. I get really dizzy when I look down, like when I’m reading or working on something. I was having a hard time occupying myself last week during my Actemra infusion because I was getting dizzy from looking down at a book or tablet. He suggested that I see a neuro-opthamologist to see if it’s a problem with my eyes. I feel like it has something to do with my neck, but I’ve been wanting to go to an opthamologist for other issues anyway so I will have the specialist investigate my vertigo too.

I’ve been taking Pamelor for migraines since last August. My neurologist has increased the dose twice since then. In the beginning it was messing with my mood a lot. I just didn’t feel like myself. Increasing the dose made my mood better, and I’ve been taking 30mg for a few months now. It’s hard to say whether it has really helped my migraines or not. I still get really bad migraines that aren’t helped by my other headache medicines. I get headaches whenever I have heart palpitations. There are foods that still trigger headaches. I can’t exercise without getting a headache. I’m having a problem with the Pamelor affecting my concentration. It’s really hard for me to do anything. Everything feels overwhelming. I feel like I’ve been in a worse brain fog since being on Pamelor. It has affected me so much that I’ve decided I’d rather have more headaches than continue with the Pamelor brain fog. I’m going to start tapering it off and in a couple weeks it will be out of my system.

I can do art with a migraine, but I can’t do it with brain fog.

The physician’s assistant at my neurologist’s office was extremely rude to me. I let it irritate me too much. Something got messed up, because I was supposed to get some blood work done but no one ever mentioned it to me or gave me an order slip for it. She acted like I just never bothered to go do it. I think she forgot to order it, and was covering her ass. Rather than admit her mistake, she was rude to me. Also, she couldn’t seem to decide if it was blood work from last August or if it was supposed to go with my ENG in March. I don’t see why blood work from August would suddenly be an issue now. I’ve been to see the doctor 3-4 times since then. Not to mention that a CBC and chem panel from last August would no longer be relevant now, in my opinion.

I guess the reason her attitude irritated me so much is because my whole life is doctors, treatments, pills, and tests. I’ve never “forgotten” to do anything before. I’ve never been so lazy that I didn’t show up for a test. I am always eager to get tests done because I want to know what’s wrong and what the next move is. It’s not like I’m skipping out on tests because I’m going on a booze cruise or joining a biker gang or whatever it is that test-skippers do. I’m pretty proactive when it comes to appointments. I always have my shit together, so if there was a mistake, it’s on her, not me.

I had my Actemra infusion a week ago tomorrow. I feel like crap. I’m really tired. I’ve also been nauseated, which is another side effect. I guess I just feel like I’m waiting around to feel better, kinda like when you have a cold or something. It made me really achy at first, and I had a horrible headache. It feels like the infusion pisses off your diseases at first.

I am also still recovering from the endoscopy. The doctor took a lot of tissue samples from my esophagus and I’ve had some pain there. I’ve also had pain from not taking the Duexis. The Duexis really controls the existing inflammation, which has helped with the pain and acid reflux. It sounds counter-intuitive that a form of ibuprofen would make my stomach feel better, but the inflammation is so bad that it’s actually helpful. When I don’t take it, the pain gets pretty bad, and it gets hard to swallow. I’ve started taking it again but it will take a few days to get back on track.

I’ll be in next week to see my gastroenterologist to talk about the endoscopy and what he found in the tissue samples. I’m finished with appointments this week, which is nice. I’ve had appointments every week since the beginning of March. It’s good to get things taken care of but it’s also exhausting. The trips to the doctors and the testing and the treatments are tiring and I need a break.

I have eczema on the backs of my knees. It’s pretty uncomfortable. It itches and burns, and sometimes it wakes me up at night. I’ve been using cortisone cream. I still have a burning rash on my neck and a little patch under my arms. It seems like it’s all eczema. It’s all uncomfortable.

Ta ta for now.

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5 Comments

  1. I can relate when you say you’re tired of all the doctor appointments, tests, procedures, pills, pills, and more pills. I feel like that is what my entire life revolves around, me being sick all the damn time. Living with many invisible, chronic illnesses is really indescribable, unless you live it. I hope one day, this will all slow down for you and me, both. Take care. 🙂

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