Bloomin' Bullshit

Yesterday turned into a busy day.

My Pop's been socializing with the construction crew that rebuilt our local bridge pretty much since day one. He watches them work and bullshits with them. They've been working on black topping the past few days, and yesterday he was talking to them about how he wants to get stone for our drive way because it's getting such bad dips and holes. Didn't they bring their equipment over and fill in and tamp down all of the problem areas for free. It was really nice of them.

Fawn

I saw this this morning and I can totally relate to it:

Chris says that's giving my grace too much credit, dick.

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.

Frail, not Whale!

Ugh, one of my friends shared this meme tonight. Everyone's quick to chime in and laugh.

Everyone that isn't affected by this on a regular basis that is.

Being chronically ill has taught me a great deal in life. One thing is to be kind in judging others.

We all judge. It's a fact of life. I've learned to not be so quick and harsh in my judgements, and if I cannot be kind in a needless judgement, to be silent.

My diseases greatly affect my ability to get around. Multiple sclerosis affects my balance, gait, energy level, and my heart. Rheumatoid arthritis makes my joints feel like glass is crunching inside of them with each movement.

A little less than a year ago I had hundreds of blood clots in my lungs and wasn't supposed to attempt shopping after I was released from the hospital for months. I did it anyways.

And I did it without the assistance of a scooter. Much to my husband's dismay.

Why? Because people are fucking assholes. I would rather struggle walking through a store half dead, struggling to breathe, with vertigo issues and extreme pain than deal with all of the fucking assclowns that are going to stand there and judge me for being a 'lazy whale' because I just so happen to be overweight as well.

Forget the fact that I've lost over fifty pounds this year, or that my weight is a result of my diseases and medication.

All that you will see, is that I am fat and on a scooter. Nothing else will matter. You will judge me, and I will be that lazy whale.

The pain of that judgement is so disheartening that I would rather physically hurt and endanger myself while buying a gallon of milk, than accept the assitance of said scooter.

So next time you laugh and share a post like this take a second to think of all of your friends and family that may be struggling with a similar issue. People you may never see use a scooter for assistance. People that really should, but refuse to out of shame.

People that struggle due to your cruelty and judgement.

Maybe one day I'll live in a world where people won't laugh and whisper because my body betrays me and I need help, but today sadly is not that day.

Expired Patience

Nothing wanted to go right today. Chris and I had a ton to get done today. We started off going to see our accountant and sign everything to file our taxes. The e-system went down so she's not sure when exactly she can get them filed or when we'll get our refund. Next we went over to Wyomissing. I needed to pick up my oxy script and get some Rasuvo samples. I haven't re-met my out-of-pocket max yet on my health insurance policy, and a number of my meds are really expensive. Rasuvo's one of the most effective meds I take, but it's also not cheap. A month's supply clocks in at $200 despite insurance.

When I realized how pricey it was going to be to refill I contacted my rheumie to see if he had any sample pens left. He did, and put a months supply aside for me to pickup. Last week when I went to get my labwork done, the labs from my rheumatologist were still in my maiden name so the lab wouldn't run them. They had to call and get a new lab order, and I followed up when I got home. I had to request medical records for Jefferson and asked them to make sure my name was switched properly in their system. She got my oxy script for me, and it was in my maiden name. There's no way the pharmacy would fill it, especially considering my insurance is in my married name and the laws on narcotics are super strict. I was annoyed, because I took care of this, and here it was still screwed up, but at least we hadn't left before I noticed it. I asked them to fix the script, but it turns out my doctor was out on vacation for the next two weeks. He goes on vacation a lot. There's so many rules for narcotic prescriptions now to discourage abuse and drug-seekers. But it really hurts real patients that have a legit need. You're only really supposed to get narcotics from one doctor. The pharmacy's weird about filling narcotics from more than one doctor, other doctors are weird about writing them. It's a pretty big deal. A pretty big deal that was about to become a pretty big problem for me. While I did nothing wrong, crossed all my t's and dotted all my i's, the doctors office dropped the ball. While I'm not addicted to oxy, I am physically dependent on it by this point (Yes, there is a huge difference. I am physically dependent on my depression medicine as well for example). If I suddenly stop taking it I will get really sick. I'm sick and in pain enough right now from my steroid taper. I started to panic, and get really pissed. After the situation was explained to the on-call they agreed to rewrite the script in my married name, but I'd have to come back Friday for it. Annoying, but it could have been much worse.

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?

A Light at the End?

Tuesday was a really big day for me. I had my second appointment with the rheumatology specialist at Jefferson University Hospital, and my first appointment with the head of the neurology department at Jefferson Neuroscience.

My doctors here are awesome, and doing the best they can with the resources they have. The science and equipment available at Philly to help is remarkable though, and offers fresh hope for me. I'm so glad all the doctors are on board with working together and understanding. I was originally worried someone would wind up butthurt because I was seeking another opinion. It's thankfully not the case at all though.

I'm really glad we left as early as we did because commuter traffic at that time was terrible. It took almost three hours, double what it should. We got there literally just in time for my first appointment. This was my third trip there so figuring out parking and where I was going wasn't nearly as time consuming. I'm starting to get the lay of the land. We had to check in and get security badges made up. The guy who did ours butchered Chris', but I'm sort of glad he did because it added some humor to the entire day. The black & white copy of his license photo looks like a terrible serial killer mugshot. Plus, I don't even know how to explain what happened to his last name. So, we have an alias now if we ever decide to go all Bonnie & Clyde if I become terminal or something. The Arcob's causing mayhem abound! I mean fine, there wouldn't be much point of an alias if I went terminal, but it was the star of some pretty imaginative scenarios and good laughs. Humor and a positive attitude is a powerful thing. Never underestimate it.

My first appointment was the neurology one. The entire appointment was unreal. It was exactly how you'd expect an appointment with something as serious as brain damage to go, but something I've never experienced. Technologies not available to us here yet. Once we were checked in a medical assistant took us back and took my vitals. Some serious vitals. It was a good twenty minute process. She even measured my balance & gait! I had to walk the length of a hallway on this mat full of sensors. It uploaded my steps onto a computer that measures your balance, weight distribution, stride, etc. They can monitor how your gait changes that way with time to see if you're progressing or getting better! It was really cool. I know, I know. The weird things that excite you when you're sick.

After that we got taken to an exam room where we met my nurse practitioner. My doctor has two practitioners that work with him constantly and I was assigned one that will be my treatment advocate is the best way I can think of to explain it. She hung out with me for awhile and took down my entire history since I started having MS problems, went over medications, pulled up labs and MRIs, and talked about what I was hoping to accomplish. She did a thorough neuro exam. I didn't do bad on most of it, but I tanked some spatial awareness tests. When the doctor came in she presented all of it to him for me, made sure she didn't miss anything, and then sat in for the entire appointment. When the doctor left she hung out with me for awhile still and made sure I understood everything he said, didn't have any unanswered questions, and knew what I needed to accomplish next. When I call for anything she'll always be the person I deal with, so I never need to worry that I'm talking to someone that has no clue what's going on. I really really like how they do things.

The doctor's really cool. He reminds me a lot of my neurologist at home, Kolva. He's this stocky unkempt Russian guy, with a deep accent and a unique sense of humor. Not only is he the head of neurology at Jefferson, but he's an immunologist as well. He's fascinated that my immune system pretty much attacks everything. While I have brain damage consistent with MS, I also have some aggressive atypical damage which has him concerned about a rare severe type of systemic or CNS vasculitis coming from my RA. And could be why I'm progressing even while on proper MS treatment. It's pretty much still your immune system being a dickhole and fucking up your brain, just for a different reason. A reason they know how to stop.

Interestingly enough, severe vasculitis is treated with chemotherapies like Rituxan. Rituxan was the treatment that made me feel the best so far, but I had severe reactions to it so they wouldn't let me stay on it. Reactions that could have been the result of massive cytokine death because it was working that well. I really think this dude might be on to something. Which is everything I've been praying to the universe for with going to Jefferson.

It could be that I have damage to my brain that they know how to stop. Damage that's currently unchecked because I could be taking the entirely wrong medication, aimed at the wrong part of my immune system. A super rare CNS vasculitis further complicating everything else I have going on.

Could be.

I have a ton of tests to get done. A buttload of work on my hands, but it could mean answers. It could mean getting better. It was a conversation a doctor hasn't had with me in a long time, and one of the main highlights of my trip to Philly. I could actually still get better. It's something I haven't thought about in a long time. I've just been trying to not get worse. Hope is a dangerous thing to hand someone, but it's something I desperately needed.

I have stacks of paperwork, prescriptions, labs, and tests to deal with. Most of which need to be done in Philly, and scheduled as efficiently as possible. It's not easy needing all of these tests and appointments so far from home, but totally worth it.

Chris doesn't want me to get my hopes up too high. It's really rare. It's also really dangerous (it can be fatal for tons of reasons, unchecked continuous brain damage, BLOOD CLOTS *cough*), but it's fucking treatable. You can read about it here if you'd like.

My mind is blown. No one's ever talked to me about this. I guess because it's that rare. I had no idea there was anything besides MS that could cause such severe brain damage. Going to Jefferson has beyond exceeded my hopes. I kind of want to make an appointment with my PCP just to give her a hug for making me go and rattle on about this exciting theory.

Every ounce of me wants to run with it and start treatment now. I want it to be right, I want to get better. But, it might not be the case. I need to do my due diligence and wait and see. The most pain staking part of being sick. Waiting for the tests, waiting for someone else to piece the puzzle together and shout 'Eureka!'.

Another awesome aspect of this angle is that it would open up a universe of treatment options for my RA. Which brings me to my next appointment!

After Dr. Leist blew my mind we went back to the car to regroup. My neurology appointment had taken about three hours. We had a little under two hours left until it was time for my rheumatology appointment across the street. Chris wanted to nap in the car because we hardly got any sleep. I attempted, but I was way to excited and full of questions and theories. I fidgeted around organizing paperwork and lab results, cleaning the car. I'm a nervous cleaner, and ruined Chris' hopes of a nap.

He wandered out with me to find a bathroom and hit up the food truck I've been dying to try the past two times we were there. They had an awesome chicken and rice platter for five bucks. Everything about being ServSafe certified and immunosuppressed says that food trucks are a terrible idea, but I like to live dangerously. Plus, steroids. I was not disappointed. By the time I was done nomming it was time to go see the rheumatologist.

She confirmed what I already knew, that I most definitely do have rheumatoid arthritis. I don't know if my damaged brain could have handled one more potentially life-changing differential diagnosis. She was fascinated by the neurologist's theory of systemic vasculitis resulting from my RA and eager to discuss it with him. She said I also most definitely have severe fibromyalgia. She added neurontin onto my list of crap I'm supposed to take, but after personally researching the side effects and what not I'm not sure of the risk versus reward yet.

Our main topic of conversation was steroids. I want completely off of them. She fears I may have developed Secondary Addison's from long term use and wants to get me down to 2.5mgs a day for now just in case. It's going to suck. The steroids are a gigantic band-aid right now. But it's a band-aid causing a whole other plethora of problems such as Cushing's syndrome. Ripping the band-aid off no matter how slowly is going to make everything flare that isn't under control. I want off, and they want to see what happens when I'm off. They're committed to fixing whatever happens, but until they can figure out how it's going to suck asshole.

We talked about lifestyle changes Chris and I have been making. We're trying to live healthier to create a better foundation over all. One of those big changes is how we eat and snack. We've cut out a lot of processed foods, and snack primarily on yogurt now. Yogurt is great for me on a probiotic level, plus some of the proteins in yogurt will help me get rid of the Cushing's syndrome. And, it's a healthy delicious snack.

Just look at our fridge, that's a lot of yogurt! I think we have pretty much every flavor in creation.

A fact that surprised both myself and my doctors is that I lost over thirty pounds since last year despite my heavy steroid use. I knew I lost some weight, but I didn't think it was that much. It makes them and me that much more optimistic that the weights going to shed off when I drop the 'roids.

Also on the aspect of lifestyle changes, the neurologist would like me to attempt to afford a Luminosity subscription to help with my cognitive function, and my rheumatologist wants me to take up an at-home yoga or Tai-Chi. I'll be stalking +Tara Gregory's stuff to figure out my own fat-kid yoga routine. Maybe I can even get +Chris Archeval to give it a go with me. While they'd prefer I go to physical therapy or legit classes it's not feasible. We have very open and honest communication because I need results and real manageable changes. Physical therapy and classes are exorbitantly expensive, and we can't afford it. Plus there's the transportation issue. Figuring out an at-home routine is a compromise I can manage that will yield results. Patients are quick to agree to treatment options that are not lifestyle compatible just to make their doctor happy and it results in failure on all ends.

If only I was as flexible as my adorable bastard of a cat whose chilling with me while I blog.

Daisy and Chris are still in bed in a coma practically. It was a long day in Philly, and took us about two hours to get home. We went to bed around eight. We were that tired. We got up around 1am for about two hours and ate something, and went back to bed. Chris is still sleeping like ten hours later.

My grandparents surprised us and got some stuff done around our house for us while we were gone. While I've been big on being independent with upkeep and projects for numerous reasons, it was a nice break. Plus she actually didn't hide half of my shit for a change. Open, honest, and respectful communication is a beautiful thing.

It's time for me to wake my husband, as we have much to do yet before the world shuts down for the day. He's still fighting off this damn campylobactor infection which is trying to ruin our lives. I wish that was the least bit dramatic. I still need to get tested for it too. Phone calls to doctors and the health department must be made, I have my pile of amazingness to dig into for Jefferson, and all of my local doctors to update.

Life is about to get a bit crazy for me for awhile, and I'm going to be in a world of hurt and suck in the very near future. For a change though, there's a tiny light at the end of the tunnel. Or is it just the beginning?

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. 

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.

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.

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.

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.

Happy New Year!

Chris got home from work and we discussed insurance options for a bit. He could tell I'm really frustrated at our current options and situation. I'm probably going to go with the cheaper option and just hope for the best with getting the proper meds approved, etc.

We dropped it for now though. I want to enjoy celebrating the New Year! Last year he had to work so we didn't get to spend it together, but this year he's off tonight and tomorrow! Yay!

Tux decided that destroying one of my wall vinyls would be a fun project today. I would have been more upset if this one hadn't been falling off already on its own. Which is what probably sparked him to remove it the rest of the way. I have been meaning to fix it, but hadn't gotten around to it yet. Now, it's removed entirely. It opens up another spot to hang some of our gorgeous wedding photos at least!

We ran out and got two bottles of a sweet white Moscato at the liquor store, and picked up some chicken to make some pollo guisado tomorrow.

We have traditions to make!

This is my first New Year ringing it in as an Archeval!

Planning on playing Exploding Kittens and Cards Against Humanity, watching some Netflix, and drinking some wine tonight. Tomorrow we'll spend the day together, drink some more wine, and eat some good food. Sounds good to me.

Whatever this new year brings I have the love of my life by my side, my home, family, friends, and pets.

So long 2015! You were an interesting year! Plenty of challenges, some near-death experiences, but also lots of love and laughs. Here's hoping 2016 is more exciting, but less dangerous!

Between a Rock and a Hard Place...

Bah. I am so worn out, and as a result I've been so lazy. The little bit of stuff I am getting done around the house is taking some tremendous inner-dialogue pep-talks. My Tysabri infusion didn't make my stomach as bad as it had been this time. Thankfully so, the increase in steroids has me starving. I'm constantly hungry. It did make me itchy as all hell though. So.itchy. That's annoying.

I've been getting some serious nerve pain in my right hip/leg/foot the past few days. This is the same hip that I broke in a car accident a few years ago and had major surgery on. I'm not sure if the nerve pain is a result of the slow nerve regrowth reaching a certain point after all these years, or if it's my MS. I hate things like this that could be from multiple things. Especially when there's really no way of telling which. If it is from my MS I likely have a flare starting, which is bad news. Last time I had nerve pain in my leg like this that turned into a flare I fell down a set of stairs randomly when my leg went numb.