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.

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?

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:

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.

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?

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.

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.

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.