Go the Fuck to Sleep!

Today hasn't been very exciting. Chris woke up feeling better after being sick for less than a day. I'm still fighting it off on day number four. I'm almost back to myself though.

I did my regular chores around the house and a little bit towards my organizing projects. There was plenty I should have gotten done, but I just didn't feel like it. I have a billion messages on the answering machine I need to return. I totally forgot about my port flush appointment and missed that yesterday so I have a concerned message from the infusion nurse.

Ports should be used at least once a month. Which was easy peasy when I was getting monthly infusions. Now I get two infusions every four months, so if I'm not getting labs drawn I have to schedule a port flush to keep the works from getting gummed up. When I first got my port in it was constantly clogging despite constant heavy use. My body was just not a fan and kept trying to 'heal' it. It's been working famously lately though. Sitting around for a few hours waiting for Activase to hopefully work isn't much fun. Nor are the nosebleeds I usually get afterwards.

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.

Sleeping with Multiple Sclerosis

Tried to go back to bed last night after I wrote my blog hoping that would wind me down enough, but it didn't work. I had a rough night trying to sleep. I was up and down I don't know how many times to pee, tossing and turning. When I finally did sleep it wasn't for long before I was awake again.

Multiple sclerosis messes with my sleep bad. I had a sleep study done last year because of it. I got absolutely no REM sleep, and woke up hundreds of times throughout the night. i wish that was an exaggeration. While I have no sleep apnea or anything of that sort, sometimes my brain just doesn't want to sleep. There's a ton of things that happen that let your body sleep, chemical changes, etc. Because of where my lesions are on my brain things don't always happen properly, and then I don't get to sleep very well. Everyone's MS is different. Hell, sometimes I think mine changes day by day. One thing that remains the same though is that it loves to mess with my ability to sleep.

Google+

I've been putting it off for awhile, but I finally set up my Google+ profile. I never really felt a need for it, as Facebook satisfied my social networking needs sufficiently. There's lots of advantages related to my blog that spurred me to take the dive.

It was a bit tricky to get figured out at first, but I think I got the hang of it. This blog is exciting to me in so many ways. It helps me save memories, share with friends and family, keep my vocabulary and writing skills fresh, contribute to the household financially, share my fiction, connect with people, and so much more. The crazy part is that it hasn't nearly hit its full potential yet.

I'm excited to see where this year takes us. So many amazing things happened in 2015.

Having trouble sleeping tonight, not sure why. Chris is in bed for work, but I got up for a bit because my tossing and turning was just keeping him awake.

Today went by really quick. He worked nine hours instead of his usual ten, and when he got home we ate a New Year's dinner with my family. We hung out for a bit and watched Burn Notice and then hit the hay. We were both really tired and crashed early, but now for whatever reason I'm awake.

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.

Disregard

Busy busy day. I got my entire list of phone calls done already thankfully. I have some chores to do yet, but I'm pretty proud of how focused and efficient I was this morning.

Called my insurance company and the girl was all 'Ohh I don't know whyyy they sent you that. Just disregard it!' And I was all yeah, disregard it until they cancel my policy and my shit's fucked up all month. And she's all 'Ohh but they shouldn't your policy is paid for. I don't understand what the problem is.' And I'm all just because they shouldn't doesn't mean they're not going toooo. And she's all 'Noo, it must have crossed in the mail. Oh wait, you paid early, hmm, I don't know. It will be fine.' And I was all ........

Twenty bucks says my policy gets cancelled anyways now, and I'm going to be pissed.

Scheduled and rescheduled a bunch of appointments. Cancelled our Sands reservation because of finances.

I'm most definitely getting sick. I'm rocking a wicked earache and some stuffiness today. Started antibiotics yesterday because I've been rocking a fever off and on so I knew it was coming. Luckily I have some time yet before the wedding to kick it. I hate fevers because I get cold, and then I bury myself in warm things and suddenly the fever relaxes and my MS is ready to have a melt down between the fever and the eight thousand layers of heat I've buried myself in. It's good times.

Not sure what I'm cooking today. Most likely leftovers for lunch. Dull day, but considering all the hectic days ahead some quiet time isn't a bad thing.