Piggy Tails

I am struggling hard to find energy today. There's so much I want to do. So many projects I could be taking on right now, and all I want to do is cuddle up in my blankies and take a damn nap. I don't even need Netflix or anything. Hell, writing this blog right now is taking up too much energy even. I tried coffee too.

Chris got home from work around two last night, and we stayed up until about five. I was up and down most of the morning from 7am on. At 11 I surrendered and stayed up. You'd think for as tired as I am I could get some damn sleep, but that's the kicker. If I give in and go take a nap I really won't sleep tonight, but probably even without a nap when it comes time for sleep I won't be able to. Stupid brain. At least it's not as bad as what it was pre-Tysabri. I would be sleep deprived to near the point of insanity. Hallucination inducing sleep deprived. It's not fun.

Not Today Either!

I was out with my Pop the other day, and we were talking about the Powerball jackpot being so high. He said the first thing he'd do if he won was donate to St Jude's Children's Hospital. It kind of caught me off guard, and surprised me a bit. He talked passionately about all the good they do for sick children, while running on donations. My Pop doesn't really talk about causes, charities, or politics. It's usually fishing, cooking, or gardening. To hear him so passionate about a charity was surprising, but in a good way. His birthday is coming up at the end of the month, and I wasn't sure what to get for him. I think we might order him some address labels from St Jude's and make a small donation in his name.

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.

My Ruff Needs Ruffing!

Chris had off from work on Saturday; it seemed like the day flew by so fast. I think it was in part because we stayed up really late Friday night and slept in pretty late on Saturday. We have a membership to a local museum, so we can visit for free as often as we want throughout the year. Chris got it for me for Valentine's last year, and we'll be renewing it. We took advantage of it yesterday. It makes for a cheap, if not free date night, and it's great even if I'm in a flare. There's benches all over the museum, so there's plenty of places for me to chill if need be, and it's naturally a quiet space so I don't get overwhelmed. Plus, elevators! There's even a planetarium! It has super limited hours though, so we actually haven't even gotten to go yet. Sort of shocking considering how much we both enjoy astronomy.

The museum changes out a lot of the displays quite regularly, so it's never just the same old thing either. And apparently with my memory some of the more stationary displays still wind up being a fun new experience. One of my favorite areas is the rocks and fossils. Upon entering that area yesterday I was all 'Ooooh, look at that!', and Chris was all 'Babe, that was there last time..' and I was all....'Shutup, I don't remember, and it's cool.'

I mean really, just look at his stupid little arms. That must have been incredibly inconvenient.

Dinosaurs and things from such eras fascinate me, and spark my imagination.

This visit I was sure to take our camera for a change. You can't photograph all of the displays unfortunately, but some of them you can. Maybe with some pictures by next time I'll still remember this silly dinosaur.

Bacteria Babies

My Pop helped me put some magnetized latches on my cabinets on Friday. Tuxington was enjoying hiding in the cabinets far too much. Tried putting a rubber band around the handles which worked for a few months, but he's figured out how to wiggle his way in now despite them. We don't want him trapesing around in our cookware, or sniffing around at cleaning supplies. Unless he starts doing some serious lifts, these should keep him out.

I haven't been getting anything really extraordinary done lately. I keep trying to remind myself that I'm under no obligation to be a gladiator every day, but that I need not get discouraged and give up either. It's a balancing act, trying to encourage and push yourself, but not to push too hard. My rheumatoid arthritis has been pretty damn stable since I stopped dicking around with my steroid levels. I think 10-15mgs is going to end up being a necessary evil for me.  I don't forsee too much extra getting done today. I need to do a few chores around the house, and make a run to Wally World before I cook dinner. The nice part about how organized I have our home by this point is it doesn't take much at all to make it look pretty damn decent in here. While there's a number of projects left on my 'to do' list, the overall standard of cleanliness and organization isn't hard at all to maintain at this point, even on a rest day.

It's a Good Day for a Nap...

Chris is off to work already today. He had less than eight hours between his shifts. He didn't get much sleep, and I got even less sleep.

There's a serious nap in my future.

Started off the day straightening up around the house. I lost my balance picking up laundry and tipped over onto my ass. Chris heard the thud and asked if I was okay. The only thing really hurt being my pride I told him I was, but that he needed to get up and get ready for work. I'm pretty sure he wound up being a few minutes late, but in all fairness no one should really be scheduled like that.

Daisy and Tuxington are already settled in on the couch napping together. Daisy's snoring away. They're so stinking cute. But it just makes me want to settle in for a nap all the more.

Unpacking My Baggage.

The story of how my diagnosis came to be, is one that very few people know the whole of besides my husband, until now...

Growing up my step-father was a raging alcoholic. My Mom and I were both abused, while she got the brunt of it. I think we both broke in different ways. We moved around a great deal. A lot of things got lost, broken, or left behind along the way. So many places and tubs became a catch all of things important that were saved yet never used. Never unpacked, or found in the obscure box they were shoved into. It's only recently I've been finally working through those things. Finding proper homes for that worth keeping, and moving on from what was not. I've cleared through a ridiculous amount of storage from my childhood. Sold vintage toys on Ebay, burned old love letters, found homes for precious trinkets.

A few items bring back precious memories, other items acting as the only proof of an event's existence. I've recently began sorting through an old jewelry box, my latest project. I have an updated more functional version to organize my jewelry better, and I have another on my 'to purchase' list to assist even more. I have a habit of collecting pressed pennies from places I go. They got their own drawer. Some of the trips I remember well. Some trips the copper trinket serves as the only convincing element that I was ever there.

I document my life meticulously now, especially moments of importance. My memory is terrible due to having multiple sclerosis. It's one of my most affected areas of brain damage.

It's safe to say that over time we all become a different person. We grow, mature, make mistakes, and ultimately become a summation of our experiences. What happens though when you can't remember the experiences you're a summation of?

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.

Secret Santa

As many of you know, I spent a few years volunteering undercover to help with pedophile stings. It was really rewarding work. I miss it. I met some amazing people and travelled to some cool places along the way. I kept in touch with many of the people I worked with, and some of them are some of the best friends I have. Sadly they all live ridiculously far away. Most years we do a Secret Santa of some sort. I always participate because I have a serious Christmas problem.

My gift arrived from Rita today, and it was huge! The paper was so adorable. Once I realized just how many presents were inside I decided I had to go sit down to open it, and took it into the other room, haha. She had a really nice pet bed inside the box which I took out first, took the tags off and taped the washing instructions to the cardboard tag and put it with my manuals. I'm OCD like that. I have a bad memory, but I have a system of where to put things, and where to find instructions for things! Haha. It works pretty good most of the time. Daisy immediately investigated it when I put it down. Tux was busy playing in the box as I unwrapped things.

 

Wedding Video!

I know there were a number of you that live way too far away to have come to our wedding, so this is for you!

You can see our ceremony, hear our vows, watch me cry, get a tremor, and try not to fall on my face! It'll be like you were there, without having to leave your pajamas.

But in all seriousness, we're pretty adorable, and our ceremony was beautiful. 

Not that I'm partial or anything.

Also if you're researching handfasting ceremonies, this is a great example! I composed our ceremony from lots of pieces of other handfasting ceremonies I found while researching, and made it so that family could be involved which I think made it much more special. Feel free to message me with any questions about handfasting!

It's Alive!

Today was a quiet day. We slept in until eleven-ish. We were up late last night discussing whether or not the toaster from The Brave Little Toaster was alive, or a robot. Chris is convinced they were all robots. The argument carried over onto Facebook. The majority of people agree with me, yet Chris still refuses to be swayed. He insists that since it's a inanimate object it must be a robot with artificial intelligence. By that theory though that would mean all the toys in Toy Story were robots too. He's silly. I'm so glad that this is the type of arguments we have in our marriage. If you want to check out the fun on Facebook feel free to here:

So Chris and I lay here talking about the lamest shit at night. Settle our argument Facebook! Are the appliances from the Brave Little Toaster robots or alive with consciousnesses??

Posted by Trisha Amanda Archeval on Sunday, January 3, 2016

A Line of a Different Color?

Today's been an off day for me. I didn't get much sleep and I've been trying to talk myself into doing things. It's mainly resulted in me fumbling around the apartment doing some light chores and eyeballing all the things I keep telling myself I need to get done.

I wish I could feel less guilty about lazy days...er...weeks, and take the time I need to get my spoons back before I try to take on the world, or even our tiny apartment again. It never works that way though. All I see are the things I should be doing, or should have gotten done by now. I expend so much energy fretting about trying to take care of me instead of it, that it would probably be easier and healthier just to do it. That is if my list wasn't impossibly long.

Everywhere I look is a project that should be getting done in the time I've spent hiding under the blankets. It's really hard to convince myself otherwise.

I know my body needs the time right now though. I'm sick, battling changes in steroids, and fending off a flare. If only the tiny voice inside my head would figure that out.

The cat's been wrestling with Daisy's bed in the kitchen for nearly an hour now. He stalks, pounces, and rolls around the kitchen with it repeatedly. I think he's practicing to murder me.

I went into the kitchen earlier for a drink and totally had my mind blown. It's known that we all experience the same reality in very different ways. Just ask a police sketch artist. In general though, we can expect that we will experience reality the same way time and time again.