We've only been awake for about four hours so far and today has already been crazy. We stayed up pretty late last night, and I actually slept really good for a change which was nice. We got up at about one, Chris helped me do some chores around the house, and then we had to scurry off to my rheumatology appointment.
I love having Chris with at my appointments. He remembers things that I forget about. Also I have a bad habit of downgrading my symptoms and pain for some reason. While I might tell the doctor that I've been okay, Chris is quick to jump in and say that I've been struggling to wash dishes all week because my hands hurt.
The doctor was actually running pretty on time. He's usually running extremely late, but we never mind because he's one of the few doctors that runs late because he actually spends time with his patients. They really should schedule his appointments differently though, but oh well.
Anne was his nurse today and I haven't seen her in ages. He usually has Ashley, she must be on vacation or something. Anne was excited to hear about the wedding. She checked my vitals, my BP was great, 110/70. My temperature on the other hand was 101 for some reason. Not sure why because I feel fine. Well, no worse than usually that is. Haha.
Griffin came in and we talked about Jefferson and how I was feeling. He agrees with their erythromelalgia and fibromyalgia diagnosis. We played the 'does this hurt?' game. He's keeping me on the Xeljanz, upped my Rasuvo dose to 25mgs. I told him how the longer I was down to 10mgs of steroids the worse I was starting to feel instead of getting better with time. He says I've been on steroids for years so as the dose starts to get lower it's going to be harder and harder. He said I should wait until after the wedding and start doing 15mgs two days in a row, and then 10mgs, and then 15mgs two days in a row, so on and so forth. Then starting the new year start doing every other day switch between 15mgs and 10mgs. I'm determined to get off of this crap, and I'm glad he's supportive of it. Chris brought up what a jerk Kolva was about us getting married, Griffin was like well that's not very nice. He was like I think that just shows just how meant to be you guys are. He gave me some scripts for the next two months so I don't have to worry about stopping in until my next appointment. And some samples to hold me over until he gets some things put through and changed with the specialty pharmacies.
Griffin was amused by my Ninja Turtle Band-Aids I had on.
I love wearing fun Band-Aids. People can be way too serious. Why not make something sucky (a booboo) more positive?
Monday afternoon I spent getting some cards ready to mail and getting my husband's birthday card ready. I don't know how to just give a plain card. It's so impersonal.
So I broke out my sticker box and got to it. Chris thought the stickers I put in his birthday card were actually part of the card! Haha, I thought that was sweet. A card I was sending to a particular friend of mine is a long over due Christmas card. The post office has failed me twice now on this. It better not fail me again. I had trouble getting a card to another person too. Different states for each of them.
Chris and I stayed up until almost 5am this morning. We got up around lunch time and ran up to Hamburg to take care of some errands. Our first stop was the pet store whereupon entering I was greeted immediately by swarms of squirmy puppies up for adoption. I wanted to herd them all into our car. I resisted though.
I dropped to 10mgs, my lowest tolerance on Monday, and by Wednesday I could feel everything start to flare up. My entire existence hurts. I emailed my doctor and let her know that things were flaring up already and she messaged me back that she put in a standing lab order to evaluate my inflammation markers that she'd like me to get done weekly before our Monday follow-ups on my taper. I got it done today in hopes that she'd have it in time for our appointment Monday morning. Within a few hours she emailed me, lab results were back already. My inflammation markers almost doubled within a few days. Higher than they've tested in months. I expressed that not only was I not kidding about feeling like shit already, but that I was quite serious about not being able to get under 10mgs of Prednisone. While she said she didn't doubt me (she yells at me for under exaggerating), having the frequent labs to track the process for Jefferson makes it even better.
There's a billion different flavor options. I taste tested a few and decided to go with the peanut butter cookie dough frozen yogurt. The grape ape ice cream flavor was really good too. I smothered mine in toppings and got to chat with Kristen for a little bit. I shared it with Chris on the way home. I had a bit of a derp moment mid-conversation with Kristen, but thankfully she was patient. I've been losing track of my conversations really bad lately. I'll be mid sentence or thought, and all of the sudden -- Poof! It's super frustrating, especially if someone doesn't understand. Chris is good at usually getting me back on track.
Chris had to order my Christmas presents online. He got me Cards Against Humanity and Exploding Kittens. I've been wanting some more games for our game collection. I'm hoping his next paycheck we can afford to get the bookcase I've been eyeing up for our game room. We're in desperate need of the shelf space with the new game system and new games.
Yanno, every time I've ever had a legit fire in my apartment my smoke alarm didn't go off. But my cooking, it acts like it's on the ceiling of hell. It's so annoying. I like my bacon crispy smoke detector, geez! I'm not burning the house down.
