Punch the Sun!

Today Chris and I have been married for six months! And some how I still haven't found a home for some of his stuff, hahah.

But no seriously, wow! I am very very lucky to have found him. To get to experience love in this degree. To have the luxury of such confidence and safety. It's something I wish for all of you to experience. I see friends celebrating huge milestone anniversaries, and can only imagine the things we will have experienced in that time.

Static

Things are really rough for me right now. My doctors have me tapering down off of steroids so they can see what symptoms all flare up exactly. They're hoping to figure out if I possibly have systemic vasculitis, and how to treat me well enough that I don't need steroids to function. While they're great for calming down a messed up immune system; steroids are really bad for you and come with a myriad of side effects such as thinning bones, muscle wasting, organ damage, and weight gain.

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.

Acceptance

Chris and I stayed up until about 4am. I kicked his butt at Exploding Kittens. The bottle of Moscato I picked out was really good. Silly us, we didn't have a corkscrew! Luckily my grandparents did. Shows how often we drink. We stayed cuddled up in bed until around lunchtime, and then got up and ran out to the store for a few supplies.

I made pollo guisado today! We decided that would be our New Year tradition. It got pretty good. Chris demolished his plate of food. I didn't really make any resolutions per say this year. New Year's resolutions can be a great way/starting point for major life changes, but at this point I don't have anything drastic I need to work on every day of the year except being happy, and trying to serve the happiness of my life, home, and relationships as best as I can. I mean sure, I could resolve to lose weight or something cliche like that, but I think that's best done in lifestyle changes, and I'm fighting an uphill battle with steroids on that one. So, I guess at the end of all this blabbering, I just resolve to do the best I can at living as long and well as I can.

Campylofuck

The mix-up with my prescription today seems to have came from my name change. I didn't change my name with my cardiologist yet, but did with the pharmacy, so when they got the fax in my married name they were all 'That's not our patient!' and scrapped it rather than following up with the pharmacy. Meh.

They called it in though, just waiting on the pharmacy to fill it now.

This whole name changing thing is a pain in the butt. There's so many places that you have to change it at, and when you have a memory like mine after awhile you start to forget where you actually changed it. I still haven't even changed it with the social security office. I need to get that done.

Appointment with my rheumatologist today was rough. He was running behind as usual. Between that and how long my appointment took we were there over two hours.

Fasting Fail

By the time Chris got home from work last night I fell asleep. Not surprised.

He crawled in bed with me and we watched two episodes of Burn Notice. And by that I mean he watched two, and I watched most of one and fell asleep, and woke up towards the end of episode two.

All I ate yesterday was freaking animal cookies. I was going to snack on something with him when he got home, but I decided since I was on a roll I'd just get my fasting labs done in the morning.

Yeah, that didn't work out so well. Woke up with Chris this morning and saw him off to work. Went up to my grandparents to steal a ride to the satellite lab, and by the time we get there they closed. We were thirteen minutes late. Fail. Why the hell do labs close so early on a Saturday anyways? You'd think it would be a prime time for people that work M-F to get their shit done, especially since most labs are closed on Sunday too. Irritating.

Doctor's Orders

I went out to Philly last week to get an musculoskeletal ultrasound done on my hands. They're the only place in the country really that does it so far. It can be even more detailed than an MRI for some things. They found a lot thickening of my joint linings in my hands, but luckily no bone damage.

I'm back to trying to get off steroids again, and paying the price dearly as usual. Steroids are an interesting thing. They can vastly mask the symptoms of a great number of things; making you feel pretty okay. Even if you're very much not. When you're on steroids for a long period though your adrenal glands stop making steroids of their own. Tapering off steroids can make your body literally go into withdrawal if your adrenals don't 'wake up' quick enough. You get sweaty, nauseous. It's pretty much a 24/7 fight or flight response. Put that on top of whatever symptoms of your disease the steroids have been covering up.

I've been on steroids for so long, it's debatable if my adrenals will wake up. So slow and steady is the key, which is hard when all you really want to do is get it over with.

Why stop something that has such great benefits and such crappy symptoms to stopping? Artificial steroids are bad for you. The amount of steroids your body needs is far from an exact science, and changes throughout the day. An excessive amount of steroids in your system causes all types of crappy side effects. Major weight gain, bone thinning, organ damage just to name a few.

Yikes!

I've been seriously slacking in the blogging department. In my defense life has been crazy. Shortly after my last post Daisy was attacked by another dog. She had to get emergency stitches. She's healing up nicely at this point. Chris was also in the ER for kidney stones.

I've taken up some major redecorating and reorganizing projects in our house that have had me pretty occupied. While I should be documenting and sharing them with all of you, it's been pretty exhasting just getting it done.

My rheumatologist is switching me back from Rayos ($12k+ a month) to prednisone (a few bucks a month) at my request so I can once again try to cut my ties with steroids. It's not easy, and I've found that now my sugar is crashing again in the middle of the night. Nothing can ever be simple.

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?

Tuxcasso?

I managed some determination to at least get the dishes done last night, and Chris was kind enough to cook dinner. Now of course, it looks like I did no dishes. I got a whole lot of nothing done yesterday. Today seems a bit more promising, but I'm still not back to what I usually do in a day.

Relaxing when I feel like garbage is really hard for me. I feel like I need to tough through it. Show the disease who's boss! All that really does though is make me feel like garbage for even longer.When I just rest though I wind up getting anxious about all the things that aren't getting done that are going to pile up into a monstrous disaster. 

Chris is really great about helping me with things that I need done. When it comes to regular chores though he's the King of 'It can wait till later'. He doesn't understand how the piling recycling, dishes, and laundry lying about cause me anxiety. Things are easier for me to accomplish in small doses. Mountains of shit to do all at once make me sad. So as I watch them turn into mountains it makes me anxious.

But I'm trying to let it go until I feel back to normal. Trying.

White Flag

Tux is extremely talkative today.

He's usually only this talkative when he wants something, but he has all the basics so I'm not sure what he's up to.

He was laying on top of Daisy earlier giving her a bath. It was adorable, and in his defense she really does need one.

I woke up this morning feeling awful. I've been down to 10mgs of steroids for a little over a week now and I assumed it would get better with time. Instead though it's getting worse.

My joints were all ridiculously stiff and painful this morning, and it's not letting up. I don't want to feel like crap for our wedding and honeymoon so I surrendered and went back to 15mgs.

Honestly, feeling like this makes me worry how I'm ever going to tolerate totally getting off of them. Which sucks, because I really want to.

The way I'm feeling today not much is going to get accomplished.

Snowball Fight!

Steroid withdrawal is kicking my butt today. My joints and back are hurting something fierce. There's so much I want to get done but my body is just not agreeing.

Finally made myself something to eat. I made corned beef hash and dippy eggs with toast. I somehow managed to burn the bottom of my eggs, but I was hungry so it didn't really matter.

I have two baskets of laundry to put away and I'd really like to finish the bathroom closet at the very least, plus I have forty more wedding programs to do. I just don't see it all happening.

Just took a pain pill an hour early, which I rarely do. Hoping that will maybe catch up with my pain level enough that I can get motivated to get some stuff done.

In my organizing yesterday I moved my bedroom touch lamp from the top of the one bureau onto my nightstand. Last night Tux turned it on not once, but twice. And not on the soft light setting either. He committed and turned it all the way up to prison escape neon bright.

Have I mentioned lately that he's an exceptional bastard?

Anywho, it seems Chris is finally done playing football so I'm going to procrastinate my day some more and play Frozen Freefall Snowball Fight!

Possibilities

So, I never did figure anything out to eat last night. In fact, I still haven't. Chris ate the other half of his cheese steak we got the night before. I didn't feel like cooking for just myself that late anymore, and couldn't think of anything easy.

I woke up at like 4am starving and remembered we got burritos the other day that we never wound up eating with our potato skins. What the hell, I thought, and went out to make one. I discovered like a moron I got myself hot burritos. I don't do super spicy stuff. Mild spice, sure. Super hot stuff gives me the hiccups for hours though. Fuck that.

Damn my lack of observation to hell.

I went back to bed defeated.

I've since been up for a few hours doing things around the house. Chris is still sleeping. I still haven't eaten, I really need to do that.

Moon Face

Chris and I worked on our wedding programs tonight. I somehow only got enough card stock to make eighty, so I'm going to have to get another pack and do some more tomorrow.

I was glad when we were done with this batch. Even with Chris' help it was time consuming, monotonous, and tiring. I did a couple on my own while he downloaded a free Frozen game on the Xbox One for me. It's something like Bejeweled. It's pretty cool. Then he started putting them together and I lined up the pages and stapled. They still need to be cut down to size.

Daisy kept climbing onto Chris' shoulder like a parrot while we were trying to work. Then her and Tux kept making themselves comfy on our page piles.

It wasn't exactly helpful.

It's 11pm and we have yet to make a meal today. We snacked on some chips earlier, but that's been it. The days are going by too fast lately. Way too much to get done.

I've been tapering down on steroids too which I think has been playing with my appetite. A little over a month ago I was up to 60mgs, and I'm down to 10mgs. My joints aren't very thrilled, but I'm determined to get off of it this time. Probably not going to drop below ten until after the wedding though. I don't want to risk feeling crappy for the wedding.

I've learned from all of the times I tried and failed at getting off Prednisone that you must do it slowly.

While Prednisone does a great job at covering up some of the symptoms from my diseases, the Cushing's Syndrome side effects got to go.

My vision's been pretty bad off and on the past few days. Worried my MS is misbehaving with the lower dose of steroids. Hopefully it will calm down. The Xeljanz seems to be working surprisingly well for my joints this time around. Soon time for another dose of Tysabri already.

It's amazing how understanding Chris is with all of it.

I suppose I better figure out something for us to eat before I fall asleep! Haha. Tomorrow shouldn't be super busy, but Thursday we have a lot going on.