A Fork in the ...Toe?

Oi have I been busy. My body's been going crazy for some reason. Getting sick probably riled up my immune system good. Rheumatoid and fibro have everything hurting. MS has my fine motor skills all screwed up, shocking nerve pain, tremors, balance issues, and some serious verbal vocabulary problems.

The insomnia isn't helping much either. When I do sleep I've been having such vivid nightmares that my screaming wakes Chris up, and he in turn wakes me up.

 

It's frustrating, but I'm doing the best I can to manage despite it. I've settled in to 10-15mgs of Prednisone a day again. That's been helping a great deal with symptom management, but I've been constantly starving in result.

I really need to go get lab work done sometime very soon. My JC virus testing is way past due. I haven't gotten my regular labs done for my rheumatologist in awhile, and my PCP has wanted some labs from me for awhile now.

Chris was off on Monday; it was also his pay day. I didn't really press to run errands though because I knew he's been feeling a bit run down since he's been sick. We didn't really have anything of urgent need either. We filled the gas tank, hit up the bank, grabbed some lunch and went home. Spent the day together playing video games and what not.

I've been super busy. Undecorating from Christmas, working on some little projects around the house, and a ton of fun stuff from the wedding is showing up. We got videos from my Uncle, pictures from the photographer, and a lot of memory keeping to do! The pictures are gorgeous. It's hard to decide what to put where.

To Drown a Fish...

Got my Christmas presents from Chris in the mail yesterday. So far i've only opened Exploding Kittens, but it looks really fun. I can't wait to play it with Chris later.

Speaking of animals and Christmas, I never did mention what we got the critters.

Funds were tight, so we couldn't get the animals much. We got Daisy a big bag of peanut butter dog treats. She loves her some peanut butter. They almost look like Nutter Butters. Her cookie jar was getting low. Now it's full to the top again.

We got Tux one of those fishing pole type cat toys. He could chase whatever's on the end of that string all day. He gets so tired out eventually because he tries so hard. Eventually I just let it lay on the floor and he'll entertain himself with it. This one has a fish on the end, and for some reason he keeps putting it in their water dish. At first I thought he did it on accident, and I took it out and let it dry, but he keeps doing it. It's kind of gross. I'm not sure if he's trying to drown it or what.

One of the things I got Chris for Christmas is a fidget tactile toy. It's great for stress, anxiety, and quitting smoking. I really like it too, it's hard not to steal from him. I generally have a hairband around my wrist to fidget with, but this is far superior. I've been looking at them on Amazon and already have planned to get a few more. They're really cool and work really well. The one I got him is something like this if you're interested.

The first night we had it he was playing with it most of the night, and then left it in his pants' pocket. Daisy of course fished it out and used it as a chew toy. It's a simlar texture as some of her toys. She broke about three links on it, but luckily it snaps apart so it wasn't too hard to fix. Chris was heart broken at first because he thought it was ruined already. They're really affordable, and there's lots of variations of tactile, stress, and fidget toys available online. They work wonders for anxiety, seriously. Check them out.

....Not Even a Mouse

When Chris got home from work on Saturday we had Christmas part three! We headed over to his brother Clyde's house. Clyde was one of his groomsmen in the wedding. We took over their presents and hung out for awhile.

Clyde and Janelle gave us a pretty ornament for on our Christmas tree, and a handmade candy cane pin. Both were really pretty.

I even got to see two of my new nephews for a bit! They had lots to say about Star Wars. I really need to watch the movies so I have a clue what any one's talking about. I haven't seen a single one yet. Everyone really liked the candy I made too!

We hung out there for about two hours, and then headed home. Chris and I finally got the WiiU set up, and I finally got to work on writing these blog posts. We stayed up until about 2am. Him playing video games, and me watching as I blogged. I fell asleep a few times in between though.

...Not a Creature Was Stirring...

This time of year with all the hustle and bustle of the holidays it's easy to put yourself on the back burner. While for the average person a few days of over doing it generally isn't the end of the world, not every one's that lucky. Please keep an eye on those you love this time of year and make sure they're still taking proper care of themselves. Almost losing my Pop the other night was terrifying. Hell, I'm even guilty myself. Most days lately I finally take the time to eat a meal around ten at night.

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.

Twas the Night Before Christmas....

Wow! I know the holiday season is busy, but this has by far been my busiest. It didn't help that Chris got paid only three days before Christmas, and my family grew exponentially. I have many more people to spoil and share the holiday with now.

Hell, we're still not done. Both Daisy and Tuxington are insisting on laying on me while I blog. It's making things interesting. Chris is working on setting up the WiiU my Mom got us for Christmas while I blog. It seems really cool so far. I'm excited to play some of the games she got us. I'm not a huge fan of open world games, or many of the newer games in general. I like the old fashioned side scroller games, Mario, Donkey Kong, etc. I looooove me some Yoshi. Chris is the bigger nerd of the two of us though, and I have some serious blogging to catch up on so he's earned the privilege of playing around with it first. We have to get more controllers for it.

This year for Christmas instead of my usual cookie assortment I made variations of chocolate crack and chocolate peppermint fudge. Both got really good. I found tons of coupons for the ingredients I needed which was helpful, and I made it at my Gran and Pop's house because they had more table/counter space and a bigger freezer. It took over ten hours to get it all done, but I made a ton. Over three-hundred pieces of fudge and who knows how much chocolate crack. I made up a tray of fudge for Chris to take to work, kept a tray for us, and gift bagged and tinned the rest up for family, etc. We did the shopping for ingredients on Monday after he got off work, and I got all of it made on Tuesday while he was at work.

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.

Dousy!

This blog is going to be a dousy indeed. I've realized I have many pictures to share! It look so long to upload them all. Our internet has been weird lately. We upgraded to a faster speed, yet it seems to be slower than what it was before. I need to check it and talk to Frontier about it.

This blog was going to be written last night, but do you know what happened while I was uploading the photos? Yeah, I fell asleep.

Then, it was going to be written earlier this morning. I got all cozy, opened up the website and fell asleep.

It's a problem. This time I am armed with coffee. Do something now autoimmune fatigue! Actually, please don't. You're probably resilient against caffeine.

Over the course of a week or so I got all of our Christmas decorating finished. It seems I haven't taken pictures of the outside yet. I've learned the key to doing things is moderation, taking breaks, and not trying to conquer the world all in one day. I take on all my daily chores throughout the day, and add some type of project in on top of it usually. I spent about three days on my bathroom project rather than hammering it all out in one day and exhausting myself.

By taking my time and doing it in spurts our Christmas decorating got nice rather than rushed by pain etc.

I spent a lot of time on our windows. Most of them aren't too hard for me, but the lower ones are. It didn't help that while I was crouched down doing the lower ones Tuxington decided to ride me like a pony and refused to get off.

Heat Miser?

Today was a good, productive day. Chris worked 3:30-Close; I'm blogging as I await his arrival home.

It was nice having the day with him yesterday, and he even helped me work on some of my project list. He took the door off of our entertainment room for me. It served no purpose other than being an eyesore blocking some serious wall space. I'm planning on putting a bookcase there now with our video games, DVDs, VHSs, and board games. It'll be really nice. First I need to save up the fundage for the bookcase though. The one I want is only $35ish at WalMart which isn't bad at all. I have the same one in our sitting room for our books and it's really nice. Other priorities are first though, like Christmas!

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.