Turtle Power!

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?

He said the ultrasound that I need done for Jefferson is a very specialized thing and no one in this area does it. His radiology techs are actually in the process of being trained for it right now but it will be some time yet. He said my best bet is to just schedule it in Philly. What a pain in the ass.

He said it lets the doctors see the soft tissue and ligaments better to assess damage and inflammation. A MRI is superior in some aspects, but the ultrasound is much cheaper. It's not something they do around here yet though. Bah!

I also learned that Griffin did his residency in Jefferson, and we shared our mutual disdain for their confusing and expensive parking garages.

I'm back to mixing drug cocktails again that really should not be mixed, but I've found I've let go of a lot of my treatment anxiety and am pretty comfortable with what I'm on right now. I'm happy to be back on Tysabri, and Xeljanz seems to be doing an okay job.

My grandmother decided to be nice and do our dusting and vacuuming for me while we weren't home, but she put some type of cleaner crap into our carpet not thinking that stinks to high heavens. With my allergies and dormant asthma I don't do well with certain perfumey products. My sinuses and lungs freak out. And she soaked the carpet in it somehow. So we have windows and doors open with fans running, my nose is still running. But I'm trying to be at peace with it, after all she was just trying to help.

Home is generally the only space I can control to not have circumstances like improper temperatures and what not that make me feel crappier. When it's sabotaged with sinus melting stank it's hard not to panic a bit.

I don't want to get sick for the wedding. I've been doing really well with not getting infections in general lately.

So, I had a bit of a panic. I found my center again.

We popped some pepperoni rolls in the oven because we were both starving and didn't have anything fancy in mind for dinner tonight. They were good, but I am hungry again so I might make some buttered pasta or something of the sort.

I'd like to get some cabbage sometime and make some unstuffed cabbage rolls, it always gets good.

A good half of my Halloween lights burned out. I've had most of them for awhile, and it's too close to Halloween to bother fixing it. Rather than figuring out which bulb it is I'm probably just going to scrap them and get some new sets when they go on clearance after Halloween. They're regularly only $3 a set, and clearance they'll be even cheaper. While it's a little wasteful, I value my sanity more. Screw going through all those bulbs, haha.

I made some phone calls and worked on updating my calendars. I have a lot going on before the wedding. I need to finish making calls tomorrow as everyone's closed now.

Tonight I think shall be a Netflix and chill night, haha. Tomorrow's supposed to be a rainy quiet day as well.