Static

Things are really rough for me right now. My doctors have me tapering down off of steroids so they can see what symptoms all flare up exactly. They're hoping to figure out if I possibly have systemic vasculitis, and how to treat me well enough that I don't need steroids to function. While they're great for calming down a messed up immune system; steroids are really bad for you and come with a myriad of side effects such as thinning bones, muscle wasting, organ damage, and weight gain.

I dropped to 10mgs, my lowest tolerance on Monday, and by Wednesday I could feel everything start to flare up. My entire existence hurts. I emailed my doctor and let her know that things were flaring up already and she messaged me back that she put in a standing lab order to evaluate my inflammation markers that she'd like me to get done weekly before our Monday follow-ups on my taper. I got it done today in hopes that she'd have it in time for our appointment Monday morning. Within a few hours she emailed me, lab results were back already. My inflammation markers almost doubled within a few days. Higher than they've tested in months. I expressed that not only was I not kidding about feeling like shit already, but that I was quite serious about not being able to get under 10mgs of Prednisone. While she said she didn't doubt me (she yells at me for under exaggerating), having the frequent labs to track the process for Jefferson makes it even better.

The Cycle of Shitty Self-Care

Yesterday I had my Tysabri infusion. I'm down to 10mgs of Prednisone a day, my lowest tolerance. And it's methotrexate day.

To say I feel like garbage is an understatement.

I've found that the days you need proper self-care the most, are the days that it's the hardest to do.

Last night I wouldn't even get myself a drink out of the fridge because the juice was behind a whole bunch of crap, and I just couldn't be bothered to move it all.

Feeling like crap literally sucks all of your motivation like a vampire.

While doing things that wind up making you feel even crappier isn't very smart, it just happens. I forgot to take my night time meds last night, in which was half of my steroid dose for the day. I woke up this morning feeling absolutely terrible. I took my morning dose and it took about two hours until I could stand myself again.

Forgetting to take a med I'm already sick from tapering is not good, but when you're not feeling well these are the things that happen.

Nutrition goes to hell because you don't have the energy or pain tolerance to cook a decent from scratch meal.

Dehydration happens because you don't feel well enough to even go get yourself a drink.

Med doses get skipped because you fall asleep early and forget.

Muscles get even stiffer and sorer because it hurts too much to move.

It's an ugly ugly cycle. One you have to do the best you can to control. I've learned to ask for help. Chris is in the kitchen right now cooking dinner, which he rarely does. You have to learn to leave other things go. Some things really just don't need to get done right now.

What do you do to help maintain self-care when you're not feeling well?

Borrowed Time?

MS is a tricky disease. While plenty of sources will tell you that MS is not a fatal diagnosis, it's not without its dangers. I'm a member of multiple support groups and what not for multiple sclerosis online, and it's pretty common place to see about a member passing on or taken too soon. It's generally from what is considered 'complications of the disease'. Treatment gone wrong, infections that can't be treated because of our screwed up immune system, lesions affecting vital processes. Depression leading to suicide. I recently saw a 'taken too soon' post for someone with MS even younger than me. It's easy to see and think 'wow, they must have been really advanced', but the reality is that's almost been me a few times now. The scare with all the blood clots in my lungs could have been really, really, bad.

My Pains Have Pain!

Ugh. There's so much I want to get done. As I pace around my apartment though looking over my options none of it seems like an appealing venture for tonight. I want so badly to be the motivated superwoman wife for my husband, but today just isn't one of those days. And it doesn't seem to be anything good intentions and a 'can do' attitude is going to remedy. Most of the basic chores are done. I haven't washed dishes, and I still have a basket of laundry left to put away. Neither of which will take long when I actually do them. 

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.

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.

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.

Deer, Dear!

Ran out to the store with Chris so he could get cigarettes. I'm sitting in the car wiggling my toes around trying to figure out what feels strange. Tux deposited a Q-tip into my shoe. He's learned where the Q-tips are kept and how to get them out. They're one of his favorite things to play with for some ridiculous reason. For some equally ridiculous reason he enjoys putting things in my shoes.

We're on the way home and there's no streetlights on our road. Our car's headlights lack much to be desired. I see the silhouette of a deer ahead and proclaim 'Deer!', which is interpreted as 'Dear!', but thankfully he saw the cause of my proclamation and we were able to slow down in time for it to safely pass. With the quickly cooling weather and the hunters they've really been on the move. A few crossed our path about a week ago as well. Be careful out there driving and be mindful of them!

We're still wide awake, and it's become clear that I've totally screwed up my sleep schedule. Which really isn't going to work out for me today because all of the things I need to do require banker's hours, and they all need to get done.

In other news, Food Network is going to make me fat(ter). Holy cravings batman.

I have no idea what I'm doing about sleep, or anything much for that matter right now. I'll be in my blanket fort pondering food if you need me.

It Feels Like Midnight

Well, we never did get our pumpkin carved yesterday. Sometimes that's just how it goes. It will live to see another holiday and hang out for Thanksgiving now. Tomorrow I'll probably start taking the Halloween decorations down.

Our chicken got really good yesterday. It was probably the best chicken I've ever made, and I've cooked quite a few chickens in my lifetime.

We slept in super late today. I actually got the handfasting ceremony done for the wedding though. So that's a plus.

Chris was a prince and made dinner. Hot dogs with chili and mac & cheese. He's now lost in Fallout 3. He's gearing up for Fallout 4 to come out apparently.

Everything feels so weird today between how late we slept in and the time change. By the time we woke up it was pretty much getting dark again.

Extra Virgin

I was so tired last night. I was a bit worried I'd read the blog I wrote last night and what I thought was an account of my day would read more like 'purple unicorns glitter gasodjoiwi pizza woijiodfjso cheesecake'. Thankfully that was not the case. We went to bed and Chris put on Scream because he's in Halloween mode and I've never seen it. I'm a child when it comes to horror movies. I'm always paranoid I'm going to have nightmares and what not.

Wedding Hair

Wow, today has been insanely busy. There's so much more that I would have liked to get accomplished, but just not enough time or spoons in a day.

Woke up about a half hour before the alarm would have went off and did some things around the house. Tinkered around with the blog a bit and discovered all types of cool features I didn't realize existed. You'll be seeing the layout and features here gradually changing, and a great deal of things under construction until after the wedding when I have more time to really dedicate to making everything look fabulous. I'm really excited about it. It lets me share more with all of you even more effectively while simultaneously making this endeavor even more enjoyable and profitable for me. Win/win!

The day started out with my bagillionth wedding dress fitting. My dress is getting really pretty, but they weren't nearly as far with it as I expected them to be by now. They don't have much to get done yet though, so I expect to get it shortly after my final fitting next week. It's pretty. I just hope Chris is wowed by it. Every girl wants that 'Oh my gosh' reaction from their husband when they walk down the aisle. I mean, I can't exactly certify that fact, but I'm running with it.

My poor Mom, they altered her dress and put the shoulder straps together wrong totally flipping the angle of the dress and making it look terrible. I don't know how they did it. Luckily they still had the same dress in another size that I think fits her perfectly fine.

Due to cold weather by our wedding day everyone's breaking out shrugs for their dresses, but they're busting them out in the wrong colors. Mostly white ones are appearing. I haven't been bridezillay about much, but I don't want my wedding party looking like a purple and white mismatched Easter basket. Go shopping for gray peoples! Gosh! Hahah.

Chocolate Chip Pumpkin Pancakes

Today's been a really great day here. Chris and I went to bed super late once again. We started watching Food Network's 'Worst Cooks in America' last night on Netflix. We watched eight episodes last night. It's a really fun show to watch. You learn some great cooking tips, feel a great deal better about your own cooking skills (hopefully), and get to laugh at all the ridiculous stuff they do.

Chris and I have had some good laughs together watching it, and it's fun to try to pick who's going to win, and who's going to get kicked off next.

Chris helped me get the chores done around the house, and things got knocked out pretty quickly. Laundry was put away, pets were fed, dishes were washed, straightened the house.

After some ridiculous cravings last night resulting from surrendering on my steroid taper and going back to 15mgs, I decided to make chocolate chip pumpkin pancakes. Chris was really excited about the chocolate chip part. He was even nice enough to peel, cube, and boil a neck pumpkin from our garden for me. Knife work with dense food items are very hard on my hands because of the rheumatoid arthritis. So I never refuse help when it's available.

This recipe was a bit of an experiment for me, and I'm pretty proud of it. They're really tasty.

Man's Unborn Twin is the Biological Father of his Son

So I was reading this article: Man Fails Paternity Test Because Unborn Twin Is The Biological Father Of His Son

And while it sounds like a headline you'd read on the front of one of those trashy magazines right next to 'My Pet Cat Controls my Husband's Mind', it's actually real. Mind blown.

You'll have to read the article for yourself to get all the details of it, but the short version is that the guy in question got fertility treatment with his wife done at a clinic. Originally they assumed samples got mixed up when the babies blood type was off based upon that of the parent's.

After lots of testing they discovered the father was a chimera. Two separate DNA's in one person. His semen was 90% his DNA, and 10% the DNA of his twin brother, that is part of him.

Crazy right?

I can't imagine getting news like that. Finding out that my twin is literally part of me. It makes me curious about some cases of multiple personality disorder. I wonder if a small portion of them are a result of chimerism?

We don't really know where consciousness is stored, and if a body can hold two separate DNA's what's to say there can't be two separate consciousnesses? I can't imagine how confusing that would be.

Floid, a Maine Coon Chimera

There's tons of cases of conjoined twins, some of them more extreme than others, but in those cases it's obvious there is more than one being present. In a case like this though it's the existence of two separate people in one otherwise seemingly normal body.

Turtle Power!

We've only been awake for about four hours so far and today has already been crazy. We stayed up pretty late last night, and I actually slept really good for a change which was nice. We got up at about one, Chris helped me do some chores around the house, and then we had to scurry off to my rheumatology appointment.

I love having Chris with at my appointments. He remembers things that I forget about. Also I have a bad habit of downgrading my symptoms and pain for some reason. While I might tell the doctor that I've been okay, Chris is quick to jump in and say that I've been struggling to wash dishes all week because my hands hurt.

The doctor was actually running pretty on time. He's usually running extremely late, but we never mind because he's one of the few doctors that runs late because he actually spends time with his patients. They really should schedule his appointments differently though, but oh well.

Anne was his nurse today and I haven't seen her in ages. He usually has Ashley, she must be on vacation or something. Anne was excited to hear about the wedding. She checked my vitals, my BP was great, 110/70. My temperature on the other hand was 101 for some reason. Not sure why because I feel fine. Well, no worse than usually that is. Haha.

Griffin came in and we talked about Jefferson and how I was feeling. He agrees with their erythromelalgia and fibromyalgia diagnosis. We played the 'does this hurt?' game. He's keeping me on the Xeljanz, upped my Rasuvo dose to 25mgs. I told him how the longer I was down to 10mgs of steroids the worse I was starting to feel instead of getting better with time. He says I've been on steroids for years so as the dose starts to get lower it's going to be harder and harder. He said I should wait until after the wedding and start doing 15mgs two days in a row, and then 10mgs, and then 15mgs two days in a row, so on and so forth. Then starting the new year start doing every other day switch between 15mgs and 10mgs. I'm determined to get off of this crap, and I'm glad he's supportive of it. Chris brought up what a jerk Kolva was about us getting married, Griffin was like well that's not very nice. He was like I think that just shows just how meant to be you guys are. He gave me some scripts for the next two months so I don't have to worry about stopping in until my next appointment. And some samples to hold me over until he gets some things put through and changed with the specialty pharmacies.

Griffin was amused by my Ninja Turtle Band-Aids I had on.

I love wearing fun Band-Aids. People can be way too serious. Why not make something sucky (a booboo) more positive?

Salmon with Lemon Dill Sauce

Tonight for dinner I'm making us salmon with lemon dill sauce. So far it's been an awesome dish to make.

To make it, take a medium baking pan whether it be throw away aluminum or glass and lightly butter it. Melt 1/4 cup butter or margarine (half a stick) in the microwave. I've found 30 seconds does a good job of it.

Mix 5 tablespoons of lemon juice, a tablespoon of dill weed, 1 and a half minced garlic cloves, a dash of onion powder, and however much sea salt and pepper make your little heart happy into the butter.

Put a pound of salmon (generally four store bought filets) into the baking dish and pour the mixture over it. Cover with aluminum foil and bake for 25 minutes in an oven that's been preheated to 350 degrees. The salmon should flake easily with a fork when it's finished.

Random Acts of Kindness

Once the stiffness wore off I actually got a lot done today. Anyone with RA will tell you that if you stay in one place for too long (like bed) it takes awhile to grease up the joints.

Got all the little trash cans collected, cleaned up Tux's mess (masterpiece), collected the laundry, made two gallons of juice, and straightened the house. Chris took the scrap out and burned it for me, and is going to take out the garbage and recycling.

We watched The Flash for awhile. We really enjoy this show. I suggest it. It makes sense whether or not you watch other Marvel shows, but if you do there's some pieces that'll excite you more. I'm thinking we're going to likely finish the first season today.

The Giants beat the Cowboys yesterday which was fun. Chris is a Cowboys fan; I'm a Giants fan. So, it's always fun here when they play against each other.

I planned our dinner for tonight: Salmon with Lemon Dill Sauce, Rice Pilaf, and a vegetable yet to be determined. Got a pound of salmon out of the freezer to thaw. I'll let you know if it's a rave or a bust.

Chris and I went to the store for my missing ingredient, dill weed. Also to grab a bag of chips and some rice pilaf for a side.

Tuxcasso?

I managed some determination to at least get the dishes done last night, and Chris was kind enough to cook dinner. Now of course, it looks like I did no dishes. I got a whole lot of nothing done yesterday. Today seems a bit more promising, but I'm still not back to what I usually do in a day.

Relaxing when I feel like garbage is really hard for me. I feel like I need to tough through it. Show the disease who's boss! All that really does though is make me feel like garbage for even longer.When I just rest though I wind up getting anxious about all the things that aren't getting done that are going to pile up into a monstrous disaster. 

Chris is really great about helping me with things that I need done. When it comes to regular chores though he's the King of 'It can wait till later'. He doesn't understand how the piling recycling, dishes, and laundry lying about cause me anxiety. Things are easier for me to accomplish in small doses. Mountains of shit to do all at once make me sad. So as I watch them turn into mountains it makes me anxious.

But I'm trying to let it go until I feel back to normal. Trying.

White Flag

Tux is extremely talkative today.

He's usually only this talkative when he wants something, but he has all the basics so I'm not sure what he's up to.

He was laying on top of Daisy earlier giving her a bath. It was adorable, and in his defense she really does need one.

I woke up this morning feeling awful. I've been down to 10mgs of steroids for a little over a week now and I assumed it would get better with time. Instead though it's getting worse.

My joints were all ridiculously stiff and painful this morning, and it's not letting up. I don't want to feel like crap for our wedding and honeymoon so I surrendered and went back to 15mgs.

Honestly, feeling like this makes me worry how I'm ever going to tolerate totally getting off of them. Which sucks, because I really want to.

The way I'm feeling today not much is going to get accomplished.

For the Aspiring Cult Leader

This news article is ridiculous!

A friend of mine shared a news article about a real estate listing in Texas for this house:

It has 46 bedrooms, and 26 full bathrooms.

What the fuck does one do with that much space?