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.

Friday the 13th!

Chris' birthday kicked my ass. I'm not particularly certain why. It's not like our plans were extremely physical or anything. I've been paying the price regardless though. I've been fighting major fatigue all week, and pep talking myself into doing anything beyond basic chores.

Yesterday I spent some time working on one of my closets. I have some bags of stuff in it that Chris brought with when he moved in that I still haven't found a home for. One of them was all paperwork; which I spent yesterday sorting between our important papers tub and keepsake box. The other is all electronics and cords. It's been my looming project of the day today, which I've only slightly dented. I've been working really hard on getting our entire home organized and free of unnecessary clutter.

Last night I made grilled chipolte chicken and swiss cheese sandwiches for dinner and we watched The 5th Wave. It was actually a really good movie. We stayed up way too late watching it. It's one of those movies that makes you think.

Happy Mother's Day!

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.

My Uncle Keith stopped by with a birthday card for Chris. It was really cute and funny. Drop a guess in the comments as to what the inside says!

Chris changed the oil in the car with my Pop when we got home, and I struggled to stay awake. I've been ridiculously tired all day. I'm fighting sleep just trying to write this blog. I'm trying not to give in and nap in hopes that I'll be able to sleep decently tonight. We'll see.

Not Todayy

Today's been really quiet. I couldn't sleep, again. I was up most of the night and just hung out in the TV room while Chris slept. He got up around lunch time. We heated up some leftover cabbage and watched the rest of Burn Notice. We finished the series today. Now what are we going to watch? Gah! We'll find something else on Netflix to dive into I'm sure. Going to give Firefly a chance while we ponder. There's only 14 episodes, but I've heard a lot of people praise it and want it back. The episodes are oddly long.

Daisy's been super huffy today, not sure what that's all about. Her life is so rough. My lungs have been hurting. Not sure why. It could be irritation from having bronchitis I suppose, but Chris was all worried about blood clots. I checked my oxygen level and that's okay, 98%, so meh.

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.