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.

Punch the Sun!

Today Chris and I have been married for six months! And some how I still haven't found a home for some of his stuff, hahah.

But no seriously, wow! I am very very lucky to have found him. To get to experience love in this degree. To have the luxury of such confidence and safety. It's something I wish for all of you to experience. I see friends celebrating huge milestone anniversaries, and can only imagine the things we will have experienced in that time.

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?

Meth

Today, has been a terrible terrible day. It all started out with getting our mail. All we got in the mail today was a single piece of mail, from the PA Department of Health. So I was all 'Heyyy derpenstein this looks important!' And Chris was all 'garbleaksgjwoiegaslkbna' because he was still in bed, but he said I could open it. So I open it and see this:

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?

Acceptance

Chris and I stayed up until about 4am. I kicked his butt at Exploding Kittens. The bottle of Moscato I picked out was really good. Silly us, we didn't have a corkscrew! Luckily my grandparents did. Shows how often we drink. We stayed cuddled up in bed until around lunchtime, and then got up and ran out to the store for a few supplies.

I made pollo guisado today! We decided that would be our New Year tradition. It got pretty good. Chris demolished his plate of food. I didn't really make any resolutions per say this year. New Year's resolutions can be a great way/starting point for major life changes, but at this point I don't have anything drastic I need to work on every day of the year except being happy, and trying to serve the happiness of my life, home, and relationships as best as I can. I mean sure, I could resolve to lose weight or something cliche like that, but I think that's best done in lifestyle changes, and I'm fighting an uphill battle with steroids on that one. So, I guess at the end of all this blabbering, I just resolve to do the best I can at living as long and well as I can.

Campylofuck

The mix-up with my prescription today seems to have came from my name change. I didn't change my name with my cardiologist yet, but did with the pharmacy, so when they got the fax in my married name they were all 'That's not our patient!' and scrapped it rather than following up with the pharmacy. Meh.

They called it in though, just waiting on the pharmacy to fill it now.

This whole name changing thing is a pain in the butt. There's so many places that you have to change it at, and when you have a memory like mine after awhile you start to forget where you actually changed it. I still haven't even changed it with the social security office. I need to get that done.

Appointment with my rheumatologist today was rough. He was running behind as usual. Between that and how long my appointment took we were there over two hours.

....Not Even a Mouse

When Chris got home from work on Saturday we had Christmas part three! We headed over to his brother Clyde's house. Clyde was one of his groomsmen in the wedding. We took over their presents and hung out for awhile.

Clyde and Janelle gave us a pretty ornament for on our Christmas tree, and a handmade candy cane pin. Both were really pretty.

I even got to see two of my new nephews for a bit! They had lots to say about Star Wars. I really need to watch the movies so I have a clue what any one's talking about. I haven't seen a single one yet. Everyone really liked the candy I made too!

We hung out there for about two hours, and then headed home. Chris and I finally got the WiiU set up, and I finally got to work on writing these blog posts. We stayed up until about 2am. Him playing video games, and me watching as I blogged. I fell asleep a few times in between though.

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.