No Rest for the Wicked

So, my FitBit is pretty damn awesome. I synced it with my FitnessPal app that I've been using off and on for a few years. I'm suddenly a calorie burning machine! But no, it's pretty awesome. It holds me accountable for burning more than I take in, and keeping moving.

I love that it tracks my heart and my sleep for my doctors, and helps motivate me with badges and bullshit. I don't see a 10k step badge in my near future yet though.

I pulled some tickers and badges from the FitnessPal app to put on my blog so all of you can see my progress on my journey as well! That should help hold me more accountable too.

I didn't take an Ambien last night, and as usual lately I didn't sleep for shit. Now you can all see just how fabulously I sleep.

Mail Timeeee!

What a day! I should have taken Ambien last night again. I didn't sleep for shit. I was up most of the night. I gave up earlier than usual and got up and got started on my chores for the day awhile. Around 9am I ran out with my grandmother to the post office and the pharmacy.

The post office was exciting! I had tons of coupons in the mail, my FitBit, and my HDMI splitter came already! I also got a giant pack of paper work to fill out for the digestive diseases doctor. Not looking forward to getting that done. Not doing it today. I'm too tired to focus. My appointment isn't until August, but I need to get it done awhile because they have me on their cancellation list and it's not anything that can get done last minute.

When I got home I cut up and sorted the new coupons, and went through and tossed some expired ones I had in my bag. 

Split Combo

It's been a quiet week as expected. I've mainly just been doing a ton of cleaning and organizing projects. Tackled the entertainment center again last night which had me ridiculously frustrated. I hate wires, a lot. I need to get an HDMI splitter at Best Buy this weekend so I can have all the devices plugged into the TV. Finally set up Chris' PS2. Once everything is all plugged in I want to tidy up the wires. I still need to find a VHS player too. Maybe I'll see if Best Buy has one cheap. The internet is making it look like you can only get combo players, and I need another DVD player like I need a hole in the head. Plus they're way over-priced. I was expecting to find a simple VHS player somewhere for like twenty bucks, bah.

Getting a FitBit is very much on my to-do list as well, it would really help me track things for my doctors. I need to have another yard sale. It's so hard to try to pick a weekend to do it. It's so much to drag down from the attic if the weather's going to suck. We've had non-stop rain here lately.

My Mom's down for work for the weekend as usual. Scotty is here too. He looks very handsome with his haircut. My Mom sent me this pic a few days ago, but it doesn't do it justice.

He's really growing. I may have to kidnap him. He has a really adorable personality.

You Too Can Lick Your Cat!

This morning was my great-grandmother's funeral. Chris went with me, and it was nice weather outside for her burial. Death is so sad. It feels so strange to leave someone you love alone in the ground.

When we got home Chris took a nap before work and I worked on making lunch. He did my methotrexate injection before he left. It bled pretty much this time for some reason and it's really sore. Not too sure what that's all about, meh. After he left I got caught up on all the chores around the house I didn't get done in the morning. I may have snuck a nap in there somewhere too.

I've been brushing the animals more since it's getting warm. They are really shedding. I could probably make a pet-hair pillow. Tuxington is an obsessive groomer, so when he's shedding if I don't brush him regularly he gets super hair balls. I don't have much experience in cats and hair balls, but brushing seems to help.

I really think I should get this, and let Chris and Tux have some bonding time while I brush Daisy:



Surviving

It's been a rough couple of days here. Work has been busy for Chris. Finances are tight as the animals needed a ton of items replenished this week. I saved about 50$ with coupons though which helped. My immune system is up to no good. I've been noticing small things the past week or so layering on top of my recent extreme fatigue. Missing when I go to grab things, frequent stumbling, mixing up words, dropping things. While it's sparse and barely noticeable to anyone else, it all stands out like an emergency siren to me. Symptoms of my MS are generally rarer anymore unless there's a trigger like heat, and they've been increasing in frequency and severity all of the sudden. Last night when we went to the store I developed a bad tremor in my left hand while pushing the cart, and I stumbled about six times. Then I later developed spasticity in my right hip and it has yet to give me relief. I'm struggling with stairs, and limping when I walk. I'm hoping with some rest it will all calm down, but it's starting to look like it's adding up to a relapse. If it continues to get worse in severity I'll need to go see my neurologist and get on a solumedrol drip before I lose my ability to walk all together. As much as I hate solumedrol, I enjoy walking. I'm trying really hard to be optimistic that it's just a passing exacerbation from stress or whatever, but as the frequency and severity builds I'm soon going to have to be a realist.

Chris' Birthday - 2016

Yesterday was my husband's birthday!

Holidays are a big deal to me. I need very little reason to celebrate with those I love. And a celebration all about the man I love most? I mean c'mon.

Monday afternoon I spent getting some cards ready to mail and getting my husband's birthday card ready. I don't know how to just give a plain card. It's so impersonal.

So I broke out my sticker box and got to it. Chris thought the stickers I put in his birthday card were actually part of the card! Haha, I thought that was sweet. A card I was sending to a particular friend of mine is a long over due Christmas card. The post office has failed me twice now on this. It better not fail me again. I had trouble getting a card to another person too. Different states for each of them.

I still have a few more cards to make and send out, but I felt productive nonetheless.

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 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.

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

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.

I'm Back!

Finally back to blog-land. I've been a busy girl. We've been redecorating our apartment thanks to some starter surprise help from our family while we were on our honeymoon. They painted our bedroom 'bridal flower' (light lavender) for us. It was a major project on my 'to do' list, so it was a nice surprise. Our wedding ceremony was fantastic! I'll share some details and pics as time goes on, so stay tuned!

Chris starts his new job today which we've both been eagerly awaiting. He's been unemployed since my near-death/blood clot experience. The time with him has been a valuable gift, but finances have become uncomfortable. Weddings aren't cheap and what not. And my disability claim is a hope, a prayer, and light years away from being approved yet. Bah. Blows my mind that it's so difficult considering MS is on the governments list of qualifying disabilities. A little less than ten hours still until Chris is back home and I've already finished all my basic chores for the day except taking the recycling out when it's light. Good thing I have a long project list and Netflix queue. 

I've yelled "Tuxington!!!!" about twelve times today already, starting with when I went out to set the GPS in the car for Chris. He's not good with the GPS and he has to go over an hour away to a different store to get hired in. Thank goodness he doesn't have to work at that one daily. Anyways, I went to put my shoe on and he put a PIN in my shoe from my jewelry case. He has this obsession with putting sparkly shit in my shoes. Ow. He's like a spoiled toddler when Daddy's not home. You know what they say.."when the cat's away..." wait...that's not right. You get the drift though.

I slept for shit last night. My brain doesn't adjust well to scheduled sleeping. It's more of a 'let's stay up until we pass out' fan. Now that I'm back on Tysabri I at least can sleep again, but depending I still don't sleep all that well. I've debated going back to bed for awhile, but I'm worried that will just set me up for failure when it comes time to sleep with Chris again later.

So, instead here I am! Debating what is next. I'd love to brew a coffee to up my current motivation level, but much to my dismay my Keurig took a crap. I monkeyed around with it for a bit, but considering I've had the thing for about five or six years I'm pretty sure it surrendered. Apparently Bed Bath & Beyond gives you credit on a trade in of your old/broken one towards a new one. Valuable information that was. So I think I'll box it up until the time comes we can afford a new one and keep an eye out for coupons. I have some powdered cappuccino nonsense in my cabinet I may boil some milk for and try. Desperate times and what not.

The growing readership of this blog is pretty exciting. It's cool to see my Adsense income jump from pennies to dollars. Being able to contribute to the home in even a small way is nice. Especially by doing something I enjoy.

I believe I shall finish tackling my kitchen organization today. I started it with Chris the other day. Pulled a ton of things out for yard sale. I mean, it's just the two of us and we easily had fifty cups. Granted they were varying types of cups, but still excessive. I have this new found giant collection of tupperware I needed to find a home for as well. My upper cabinets are impeccably organized now, but I still need to do my lower cabinets and pantry. That'll kill some serious time. The upper cabinets were pretty much an all day project, and that was with help.

I trimmed Daisy's toenails the other night, and surprisingly enough Tux let me trim his last night. He's a good cat. I used to be convinced they were murderous beasts, but he's definitely changed my opinion. He's still a bastard though. Time to take on the day!