So close I can taste it

The cat room transition is almost complete. Yesterday I painted baseboards, then once they were thoroughly painted, I nailed ’em up. The only thing left is doing the final cut of the carpet and installing the transitions.

Oh, and everything else we can think of.

This morning, Branden suggested maybe sealing around the bottom of the baseboards with silicone. Normally, of course, that would be ludicrous, but since this is a room in which kittens are being potty-trained, and we installed vinyl flooring exactly because we wanted a non-absorptive surface: making it impossible for… undesirable substances… to get under the baseboards and subsequently under the floor“boards” is probably a good idea.

Oh, and Branden wants a new bookshelf. Oh, and I want to make a bookshelf cause I’m sorta over the $35 Target bookshelf lifestyle. So. You know. This project will be over never ever.

I want to have a bookshelf whose bottom shelf is actually a kitten habitat. A bed, a scratching surface, an agility playground… I would love that.

I really want to get the endless crap that is currently in our office, hallway, and bedroom back into the cat room where it belongs. On the other hand, why not do all these projects? Sounds fun to me. I haven’t had so much energy in a really, really long time. I’ve been super productive this whole week, and efficient, and organized. I almost feel like a real human being! I want to keep up the tidal wave of awesome, and why shouldn’t I? Maybe my real calling is craftsmanship.

We are coming up on the MuckFest so dang fast, now. Please consider donating to my team! Every dollar helps get us one step closer to a world free of MS. Plus, you’re helping me earn a warm shower on the day of the event. You don’t want me to freeze my fingers off, do you? I didn’t think so.

•••Hey, did you know? I’m fostering kittens! Come follow my tribulations on my kitten blog! Paw-Purr-azzi•••

Flash (non-)fiction project via Terrible Minds

March 2010: I was out in the complex putting fliers on doors when I got a call from my neurologist telling me I had to go to the emergency room.

I had to be dreaming. You don’t get a call from someone to tell you that you have to go to the ER, right? You go to the ER because you’re bleeding, vomiting, or otherwise leaking bodily fluids. You generally know you need to go to the ER. You don’t get told by other people, on the phone, unsolicited, that you’re having a medical emergency.

I didn’t know what to say. Branden (and everyone else I knew, including me) was at work. I felt uncomfortable driving myself 30–40 minutes to the hospital, in part because I was shaken up by being told I had to go to the emergency room and also because I’d been having an MS exacerbation that was drastically affecting my balance, vision, and sensory perception.

I don’t remember a lot of what happened. I know I called Branden, and he figured out a ride for me; I know I got back to the office and told Jessica that I had to go to the hospital and could she please tell Shelly for me?

It was not the first time that I’d felt that the expression of my disease was judged inadequate by people who, for some reason, were absolutely sure I was trying to cheat them somehow. After all… who is told that they need to go to the emergency room? I seemed like I was doing just fine, which is what happens when you try to not look like you’re drunk at work; when you try not to complain about the tingling in your hands and feet; when you try to hide the way you sometimes make fists that go all the way up to your shoulder and you can’t release them.

My friend Fletcher drove me to the hospital. I remember hugging Christina before getting in the car to go, but I don’t remember the drive. I remember going to check in to the ER and they asked me what was wrong—there is little that is more awkward than having to say, “I don’t know, my neurologist told me to come.” I remember the quagmire of human misery that surrounded me. The rest is flashes.

I know that I sat there, with Branden and Fletcher, for hours before the neurologist on call came out to talk to me. To this day, I don’t remember what the problem was. Something about the results of my recent MRI. They wanted to check me in overnight, so I told Branden and Fletch to go home. A bare few minutes later, she told me that, in fact, they weren’t going to check me in and I could go. My phone was out of batteries. The neurologist loaned me her phone, and I luckily had Branden’s phone number memorized; if he hadn’t had his phone on him I’d have been SOL, because I’d never bothered to memorize Fletch’s California number. I managed to catch them before they were out of the parking lot. We went and had pizza. I’ve never experienced anything quite so unreal.

Source: Terrible Minds by Chuck Wendig

I'm gonna talk about it now.

I promised myself when I started this blog that it was not going to become mopey mopey Emoville. So I’m writing this post in the spirit of grabbing my demon by its horns and showing it to the world. Maybe doing that will help me fight it. Or maybe it’ll just get me a little leeway with my gentle readers when I don’t blog every single M/W/F or write as many words as I should.

I’ve mentioned my fatigue and my MS before. I’ve tried to downplay it, or to only give it a glancing blow on my way to more upbeat things. But I think the result of that is to make myself look like I’m failing to achieve (or even approach) my goals for… no reason. And I don’t like giving it power over me, but that doesn’t mean it doesn’t already have it.

Fatigue is a lot like depression. So much so that I don’t think I can safely say I don’t have a certain amount of depression. Fatigue is different from being tired. There are days when I feel like I have energy; I have no desire to nap, but I simply cannot bring myself to do anything productive, be it chores, errands, or writing. For chores, even the first, smallest baby step seems like a mountain, or a sheer rock face. For writing, I open my document and I read the last thing I wrote and I put my fingers on the keyboard, and then… nothing comes. I do what they tell you to do: I write nonsense or I write journal-style just to get the words flowing, but the heart isn’t beating. I can squeeze out a few drops but that doesn’t make it flow.

Fatigue is present in most people with MS even if they have no neurological symptoms or lesions, like me. For me, fatigue is crippling. I fail to fulfill social and familial obligations. I have to cancel activities that I was really looking forward to. Almost everything I do, I have to force myself to do. Except on days when that’s not true. Some days, I feel almost normal. I can do three or four whole things (or, alternatively, write a couple of thousand words) before crawling into a deep dark hole. If I’m not careful, I can spend all the energy that I have that day and overspend into the next day’s energy, leaving me twice as wrecked as I would otherwise be.

And those days are almost worse than the others, because they make me feel like I’m failing all the rest of the time.

I have a problem moderating myself, separate from MS. As long as I can remember, I’ve been inclined to follow rules that I set for myself as though they were set in stone. I think that’s because I went through a phase where having no rules resulted in me failing out of college. So, if I “break the rules,” I have no safety net. I eat a bag of Doritos, drink a 2-liter of Mountain Dew, and play Don’t Starve while Law & Order: SVU plays in the background. My therapist tells me that sometimes I can’t be productive, because, uh, I have MS. But “being kind to myself” looks, to me, a lot like breaking the rules. And the more I break the rules, the easier it is, and the harder it is to “be good.” So, being kind to myself may actually result in me losing all the good habits I’ve made over the past eight years. Can you blame me for getting mad at myself for backsliding? There are only so many things I’m proud of—I’m not going to forgive myself for losing all of them.

So, I have no energy. So I turn into a person-sized slug on the couch, incapable of doing anything else. So I get mad at myself for slugging. And that sucks more energy out of me, because (just like kids whose parents say “no” more than “yes” end up feeling like they can’t do things,) if I don’t have my own support, I’m not going to feel empowered to accomplish anything. So the next day I have even less energy. So I can’t write, or do anything else. So I get mad at myself. At a certain point, I can’t even sleep anymore, I’m too busy being pissed at myself. So, guess what? No energy. And on and on it goes.

It’s bad enough knowing that I could never support myself anymore. If Branden were to upgrade to a newer model, I’d be up a creek. It feels like I was robbed, since I was aimed at a master’s degree in architecture when I had to admit defeat to the fatigue and confusion and the lack of balance, sensation, and coordination—like the weeping angels touched me, my potential was stolen from me, and I am doomed to whatever scraps I can get now, from my tiny cage lined with wood chips. But I feel like my brain is my enemy. And when your brain is your enemy, what could an ally possibly offer?

I am trying to learn brainhax to trick myself into moderation. Make good habits of self-regulation. But when even that feels mountainous and unattainable… I feel like I’m in Inception, just falling deeper and deeper into limbo.

So… that’s where I’ve been for the last few weeks. Please stay with me. I can’t do this alone.

MuckFest revisited

I wanted to blog about this on Sunday (or even Saturday), while it was fresh in my mind, but I didn’t. And then I didn’t on Monday. Or Tuesday. I really wish I had, because things have gone a little fuzzy at this point. I’ll try to do it justice, though.

The forecast for the day was high of 54°, 80% chance of rain. The obstacle course involves getting extremely muddy, and often wet. I was sublimating my stress about the possibility of hypothermia as well as I could, and everyone who talked to me about it made sure to tell me that they “may be skipping all the mud this year,” to which I replied, “feel free; I know I will be.” However, when we actually got to the course, it was a lot warmer than I’d expected and rain seemed unlikely. Everyone was arriving in plenty of time and everyone was happy to be there—what could possibly be better?

I’ll tell you!

The last group of people trickled in, and I could see at a distance that they were wearing bright green t-shirts. To myself, I thought, “Aha!!!” I had hope burgeoning in my breast. Perhaps, someone had come up with a way for us to see each other at a distance. Squinting, I could see that there was some kind of printing on them, at which point, I thought, “uh oh…” because my snails art has historically been legen… wait for it… dary. I felt a stab of jealousy that someone had usurped my throne. However, when they came within viewing range I saw that the art was faithful in its rendition, but just different enough that it was a clear homage, not an original Conley. I squealed and greedily grabbed my shirt, but then, from the depths of a duffel, emerged the true headliner of the day: heavy-duty, unbelievably pro-looking eyestalks.

How could this be.

My friends, who are amazing, had all been working overtime to produce team t-shirts and eyestalks, because they knew I hadn’t mustered the will to make anything this year. I was (and am) incredibly touched, for reals. It’s an amazing feeling to know that if you drop the ball, someone is there to pick it up. So, Steph, Carlie, Shad, Chris, Dan, and anyone else who helped that I don’t know about, thank you so much, it really means the world to me, sincerely. *big wet sloppy kisses*

Though I could gush more, I think I’ll move on to try to describe the race.

This year has been very rainy, so they delivered on their promise of mud better than they have in other years past. There was a long “mud river” on an extended downhill stretch that I found to be delightful, and I kept making references to Artax and the Swamp of Sadness (in case you didn’t catch it, Racing Snails is from The Neverending Story, too). There was a later part in which the mud came up to the upper thigh (and the water, above the waist) that was more Swamp of Sadness-y, but why take the risk? Anytime you can reference Artax, do so, sez I. I thought that this year’s obstacles were more fun and challenging and less focused on getting wet than it has been in the past, so that was really nice, considering the temperature of the day.

Which is not to say that there weren’t “get wet” obstacles. Most of us skipped the one that was just “jump off a high place into a deep pool of freezing-ass water” with no regrets at all. That’s the only one I skipped, though, and kudos to me, because rope ladders freak me out for no good reason.

As we neared the finish line, the clouds started rolling in and the temperature started dropping. There was an obstacle that required riding a zip line to the end and then plunging into water for the last few feet—there was no way to avoid it. Sadly, we hit that obstacle just as the sun went behind the clouds, so those of us who participated spent the rest of the race several degrees colder than we’d been up to that point. After that, there were three more obstacles in quick succession, then the merciful finish line.

Sadly, the tribulations didn’t end there. The worst part of the course came after the race was over, this year, and it was brutal.

We were already wet and cold, and covered in mud from head to toe. Our only option for getting clean was this communal shower area that consisted of hoses with spray nozzles hooked up to the Devil’s ice machine. I tried stripping down to my sports bra to rinse off, but at that point I realized that I’d left my towel over in the base camp, and the wind had started blowing. When I got back to the base for my towel, I had given up on the idea of getting clean and was focusing on not freezing solid.

I managed to change clothes somewhat successfully in the changing tent. I somehow managed to lose my sports bra, but I think I’ll live. When I took my clothes off, you pretty much couldn’t tell; I was a uniform brown color. I hated putting clothes on over that. Plus, I was still cold. We stayed a bit longer for the free lunch and getting swag, but my teeth didn’t stop chattering until I was back in the car with the heater blasting.

When Branden and I got home, I rinsed our mucky clothes on the driveway with my garden hose. Then, we stripped directly into the washing machine. We showered, soaping and shampooing twice, until finally we felt un-mud-golemed, if somewhat exfoliated. We washed our clothes twice, too—and unfortunately, it looks like the stains are never coming out of the beautiful shirts. Sad, but it was so great to have them anyway.

I was surprised by how human I felt. In previous years, all I had wanted to do post-MuckFest is watch TV until I fell asleep (moments later), but this time, I felt… pretty fine. It wasn’t until about 6:30 that my eyes started to feel tired. We hit the sack pretty early and slept like rocks.

Sunday, I was sore. My right elbow felt overextended and both my forearms were complaining. I was comparing bruises and scrapes with my brothers at Sam’s #3 and plotting next year’s shirt and fundraising incentives in my head. Okay, MuckFest 2016, bring it on!

Muck Festival

The time has come once again for the annual recognition of my MS. I try not to do it more often than that, because why would I? It’s kind of a bummer. Of course, this year’s festival is happening a mere eight months after last year’s, so… there’s that. But you see, this skullduggery caused me to short-circuit on the fundraising front, and the shirt-design front, and the team-building front… basically on all fronts except for the actual signing-up-for-it front. Much to my surprise, my team, the Racing Snails, has still raised over one thousand dollars, no thanks to me. Great job, team!

If it weren’t for climate change, having the MuckFest in May would probably be a good idea. However, those of you in Colorado will know that this year has been… a bit schizophrenic, weather-wise. Eighty degree days in February, snow in May, eighty degrees again, and then this Saturday in Larkspur (when/where the event is held) will be fifty-four degrees and raining (eighty percent likelihood). So, hilariously cold. But we Snails shall prevail! We are mighty! We are… crazy! And we will probably be popsicles! So… pray for us!

For anyone reading this who doesn’t already know, the MuckFest is a mud obstacle course that raises money for the National MS Society, and I’ve participated three times so far. Every year, it’s fun and challenging and epic. Last year, we raised enough money to win the use of a GoPro camera (in addition to the GoPro camera my teammate already owns, so two GoPro cameras, ah ah ah). We made an excellent video chronicling the various obstacles, which is certainly boring to everyone but us. I hope that they don’t decide to schedule the next MuckFest to be in four months or two months or two days or yesterday, because I’d very much like to make shirts for next time, as well as actually fundraise.

Prepping for the race is always stressful. It’s that thing where no matter how prepared I am, I always am sure that I’m forgetting something. I am the one who organizes where we meet. I am the one who sends out the email reminding people of what they need to bring and when they need to get there. And I end up feeling responsible if not everyone has as much fun as I would like—but, because I’m crazy, I don’t get to take the credit if they do have as much fun as I would like. The last few days have been exhausting, completely unrelated to the MuckFest, and I’m nervous about tomorrow. I just hope that everything goes smoothly and no one freezes to death.

So, dear readers, please support my team by visiting my page and clicking “Donate Now”, near the top right corner. Any size donation is wildly appreciated! And feel free to come spectate and cheer us on! Our wave begins at 9:30am. Hope to see some of you there!

You think you're nearer your destination when in fact you're slip-sliding away

So. You may or may not have noticed, but I failed to blog yesterday. I try to keep a M-W-F schedule, but yesterday... yesterday was one of those days.

In the course of my disease, there are some things I’ve learned that are going to happen. These things happen with the best, most effective medication. There is no real way to predict when it’s going to happen, but it’s most frequently on days after days that I’ve spent a lot of energy, either mentally or physically.

These “things” of which I speak are mostly days on which I can’t—or don’t—do anything. I mean anything. I laid on the couch from 8:30 am till 5:50 pm, only getting up to go to the bathroom or, at about 3:30, pour myself a bowl of cereal (technically my breakfast). I had a cut on my thumb, and the neosporin was about two inches out of my reach, and I just couldn’t be bothered to reach over and get it. I’m slightly amazed that I got up the motivation required to turn on Netflix. I didn’t open my laptop to read my comics or Tumblr.

That level of apathy is, I feel, incomprehensible to a normal, healthy person. I think that that kind of behavior is associated with depression, but for me, it’s not. I’m not depressed. There were moments, yesterday, that I was like, “Elly, you really should eat something. Elly, you could be doing something more fun,” but the fact that I wasn’t eating or having any fun didn’t really bother me.

I spent months and months, possibly years, getting really angry at myself, frustrated, and pretty freaked out when this sort of thing would happen. Then I got therapy, coincidentally with a therapist whose mom has MS, and she helped me understand a few things. These things have been key to not descending into misery and guilt.

1. Blaming and punishing myself doesn’t help anything. If anything, it makes it more likely to happen.
2. Sometimes days like that are going to happen, and the most healthy thing to do is acknowledge it and deal with it as it comes, like you would a headache. One doesn’t blame oneself for a headache, or feel guilty for not powering through it, so why should I do that with my fatigue?
3. It’s a real biochemical thing, not a choice I’m making. Not being able to force myself to get up and be productive isn’t a failing any more than not being able to grow wings and fly.

So I deal with it, and I am kind to myself when it happens, but I won’t pretend it’s a blessing or something to have an unannounced “relaxation” day.

Because it’s not relaxation. There’s a large difference between fatigue and relaxation, which is a thing that a lot of people really fail to understand. It’s a day completely lost. It’s like going to sleep on Sunday night and waking up Tuesday morning. I’m not more rested, really (metaphor aside), and that’s a day of my life that’s gone. The chili I was going to make, the shopping trip I was going to do, those things are still not done. And now there are more things that need doing. (For example, today I’m going to write 4,000 words.) And thinking about that makes things seem overwhelming. I don’t know if this is normal, but a lot of days, the only way I get anything done is to approach it with baby steps, or I don’t get off the couch.

And to me, that’s scary.

Anyway, I don’t want to focus on that, because today is another day.

I am writing as soon as I post this blog. I made a lot of progress over the week, and I’m super excited about that. My current word count is 11,180. I feel like the pacing of my story is good and that I’m going to have more than enough content to reach and surpass 50k, hopefully 75k. Of course, that’s hard to see from here, but I’m getting better at gauging stuff like that. NaNo and the revision have really helped me get a handle on pacing and how much content is actually in a thousand words.

Somehow, this story is very writable. Before I started it, I was writing a different story (which I find I can’t really describe in a sentence), and I would struggle for every word. When last I wrote, my word count was 38,640, and it felt like at least three times that, based solely on how long I spent writing it and how much mental anguish went into it. Despite the fact that my writers’ group was enjoying it and giving me kudos, I hated it more and more every time I wrote. This story isn’t like that; for all my insecurities, I still write like a house afire when I can focus long enough to do it.

And that is exciting, and encouraging. We’ve got writers’ group this weekend and I’m very excited for it, even though, as I’ve said in other posts, feedback on a work in progress is only so helpful.

So, do you have hard days? Are you making progress on your stories or revisions? Let me know in the comments!

There are always excuses

I meant to blog on Friday, but it ended up not happening.

Friday, at least, I had a good excuse.

Due to an unfortunate series of events, I ended up taking two doses of my medicine on accident. My Gilenya (MS medicine) and my Adderall. Because of the double dose of Gilenya, I first attempted to induce vomiting (which I failed. I could never be bulimic) and then spent about fifteen minutes on hold with the hospital trying to find out what I should do. The safety information on the drug said I should go immediately to the ER and that I would have to spend the night there with continuous EKG/heart rate monitoring. I was not excited about that prospect, so I really wanted to make sure that it was actually necessary—thus the long wait on hold.

(As a note, the more relevant reason I chose not to go immediately to the ER was the very valid fear that they wouldn’t know what to do with me. My medication is not particularly common, and I would be surprised if the doctors on call knew what it was, what it treated, and what to do in the case of overdose. So... yeah.)

Anyway, after waiting on hold for a total of twenty minutes, I finally got someone who could ask someone to call me back.

Shortly, the nurse called me back, scolded me for taking two doses in one day ( O_o ) and said I’d be fine.

Whew.

Once that emergency passed, I was able to focus on the issue at hand: I had twice the usual amount of Adderall in my system. I felt like I could have cleaned my whole house, twice.

Luckily, I had a friend on hand to keep me busy, so I did no such thing. Luckily.

So, between panicking and being distracted, I wasn’t able to blog on Friday. That combined with the fact that I didn’t have much to say, I didn’t feel too bad about letting it slide.

The following day, I was exhausted (perhaps predictably), but I did my best to add to my summary. I made significant progress, and I’m happy with that. But I haven’t written a word since then. Which brings me to my post title: there are always excuses.

Frequently, they’re very good excuses. Frequently, they’re reasons and you should do whatever the thing is that you need to do. For example, I needed to get my prescription filled today, and pick up food for tonight’s dinner, and then subsequently cook that food.

But even more frequently, they’re not good excuses. The reasons are “poor time management,” “lack of prioritization,” and the like. (Even today, there was plenty of those.) It’s very frustrating to me when I sincerely want to write; I’m even inspired to write, and I just can’t seem to do it. I don’t know how it manifests for other people, but I open up my file and immediately get incredibly sleepy.

The bitch of it is, I can’t seem to actually sleep at those times. I’m just a zombie. But, it’s not a good excuse. It’s my body writing me a note to give to my writing, excusing me because I “have asthma”. But I don’t have asthma. If I just pushed through it, the sleepiness would subside and give up, crawl back in the cave it came from.

And because I know that, my body or mind have found other ways of cutting my legs out from under me.

Now, this concerns me a lot. On days that I go to the gym, I find it very difficult to write (or do anything creative) afterwards. I don’t know why, but I hate it. I want exercise to be an invigorating, energizing activity, not something that shuts me down for the whole rest of the day. Because if it is something that shuts me down, that means I should probably do it after writing... but then I know I’d never get up the motivation to go at all. And it’s very important for disease management and maintaining this hot body that I get to the gym on a regular basis. Also, going to the gym gets me physically out of the house, which is definitely not guaranteed in a day, otherwise. I don’t know if employed people can actually sympathize, but sitting for sixteen hours a day is... really not good.

Anyway, this is sort of a venty post. I’m going to spend some time working on my summary tonight and hopefully I’ll have something more interesting to post about on Wednesday. Thanks for listening!

Small update

Well, just a little news. Griffin and Aaron have their own place in Longmont now. We left the Habitat apartment just a little worse for wear after 4 years of habitation but as clean as we could make it. We just hung a set of shelves in our bathroom—and that's hilarious, because it's a $400+ set of shelves I won from ListenUp 2 Chrismasses ago. It was supposed to be a media shelf and is thusly very heavy-duty and stylish. It has holes for cord management. I'm going to have to post a picture later XD

Last night I worked with charcoal for the first time in years. I'm drawing Dr. Who (Eccleston) because he's a cool lookin' dude. I got stuck jumping from the left side of the face to the right, but I'm going to come back to it later.

I also drew the next page in my comic. It didn't hurt at all! We had a lot of fun talking about art and what it "should" mean when you can't expect to make a living off it... Anyway, I'm feeling a lot more artistically optimistic.

MS is same-old, same-old. Saw Vollmer on the 24th and that was, as always, a positive experience. I'm on track to be going off Tysabri in December as planned. My next infusion is September 8th.

In other, less awesome news... I have a stack of paper over an inch thick. Each sheet has someone on it that I have to call... today. >_<

So yeah, that's all I got to say =) Hang loose, all!

New phase of life

Okay, it seems like it's been forever since I had a real, live update. Even the one in February doesn't count. So, here's another life update for the morbidly curious.

I've been on Tysabri for 6 months now, and I've had nothing but good experiences with it—medically, that is. Every single month is an adventure in pincushionhood, on the other hand. But what can you do? It's like one of those silly stupid hypothetical half-drunk questions: "would you rather suffer more MS symptoms ... or get poked with needles for hours, one day a month??" I guess I've learned the answer to that one.

Other things in my life have been greatly affected by my choice in medication. For one, it causes birth defects, so I can't decide to try to have kids until after I'm off it—if I was planning on trying anyway—which, shockingly, scarily, and horrifyingly enough, it seems I may be.

My mother has also wanted to be present for my infusions every month. This hasn't always been possible, but when it is, I absolutely hate it. She gets far more upset about bad pokes than I do, behaves embarrassingly (ie, acting out her parade stories as she's telling them to me... in the infusion room), and, most frustratingly of all, answers questions that nurses ask ME.

(Days Later) Whatever. Moving on.

Branden and I celebrated our 2-year anniversary a bit ago, the last weekend of May. It was very relaxing, romantic, and awesome. On the way home from Denver, we got a call from Branden's mom telling him that his brother Aaron had been sending her disturbing text messages about how she was going to lose a son, and other suicide-sounding messages. Now, Aaron had just spent a week or two down in Pagosa with her, attempting to work for her boyfriend's raft service. He had to go back up to Fort Collins for a parole meeting. On his way up there, his motorcycle broke down. So, he missed his meeting and was stranded in Fort Collins with no money and no place to stay. He had a sort-of girlfriend and his (and Branden's) brother Griffin up there, but for one reason and another he couldn't stay with either of them. Cutting out the details and intervening events, we got ahold of Aaron and offered to fix his bike for him if he would bring it down to Boulder and take it to a mechanic's.

The saga of the motorcycle is long and convoluted, but that isn't the important part of the story, so I'm going to condense it down: we got the motorcycle fixed, a couple of days later it caught on fire while he was driving so he parked it somewhere "temporarily." Then he finds out from the person who actually owns the bike that he is going to report it stolen to get out of paying it off, etc. So, the bike is gone and honestly, I'm relieved.

So, come to find out, Aaron's stay with Deb turned out about as well as his entire childhood with Deb... which is to say, not very well. So he decided not to go back to Pagosa. We offered him room on our couch while he found a job and saved up enough money to get his own place. So, he's been living with us since May 31.

A week or two later, Griffin came down and also started sleeping on our floor, looking for a job.

Condensing again: They're both gainfully employed now, saving money to get their own apartment together in the Boulder area. They both feel like they're getting a new start to life and that the situation in Fort Collins was terribly toxic. It seems that Aaron may actually be getting free of the witch. And, all is good in Conley boys land.

Branden and I lived in the Habitat apartment with them until June 23rd, when we got the keys to our new apartment in the Horizons, where I work. However, ON the 23rd, the day we were supposed to start painting and moving, I woke up with a terrible stomach ache. Branden took me to the hospital, and 12 hours later, they took out my appendix. It basically decommissioned me for the ENTIRE MOVE. This would have been great except that, of course, I spent the whole time feeling frustrated and guilty that I wasn't helping more. I'm still not supposed to lift more than 25-30 pounds for another week or so.

But, we got moved (mostly). We have a few more carloads, and our house is quickly filling up (yikes!), but it looks great. We're starting to feel like real grown-ups, and I don't know how I feel about that. But, it does feel nice to not live in chaos anymore. The Habitat apartment is Griffin and Aaron's until August 9th or so, when they have to be moving into their own place so that we can start cleaning and getting it in order for move-out.

We lived at Habitat for 4 years, so this transition is quite a shock for me. I had forgotten how to move, which seems to be mostly okay because I think I've broken some of the more horrible habits I have about it. I'm going to miss it, but the new place really is vastly more awesome, with better amenities and the whole bit.

Also, my whole repertoire of friends is moving up here. Dan and Carlie and Chris Rossi are already here, Joe and Sarah are moving in this weekend, Steph and Ian will be moving here in August (probably), and there may be a slow trickle of other friends, depending on how taken they are with the place when they come to visit. Shad won't be joining us, unfortunately. That actually makes me sad because we used to hang out a lot, now we probably won't anymore.

I'm not a total convert to the area. I hate Safeway (as compared to King Soopers). I don't like suburbia. It feels ungenuine, because it's all apartment complexes or condo communities, and chain restaurants / retail stores. There're no small, long-established local businesses. No cozy nooks. But the price and location is right, for now. We'll see for the long term.

Well, that's all for now peeps. Talk at you later!

*meanders into the room*

My long-lost best friend from middle school is an amazing blogger, an inspiration to single moms and married childless couples and anyone else in the world in my opinion... and she gave me this award. I'm not sure I deserve it, and I'm even less sure that I have the nerts to say 10 things that are difficult for me to share... 1) because I feel like I share almost anything under the opinion that if I'm not proud of thinking it then I shouldn't be and 2) because if I'm not sticking to that opinion then it's REALLY something I shouldn't be sharing. But I'll give it a shot, eh?


The Honest Scrap award is given by other bloggers who consider a blog’s content or design to be brilliant. The awardees must then post ten honest things about
themselves and pass the award on to other bloggers who fit the bill – in other words, whose blog is brilliant.”



I think honesty is put to the test when you tell people things you’d rather not share. Things that scare you. So here’s 10 painfully honest / potentially disturbing things about me (proceed with caution):

1. I think I've lost the capability to express myself artistically. I tell people who say this sort of thing to me, "that's ridiculous, just make yourself do it!" But I can sit and stare at a blank page for hours, feeling more and more frustrated and helpless. I don't want to give up but repeatedly trying and failing makes me feel worse than not trying.
   
2. I fear, often, that I've made all the wrong decisions in my life. Yes, I'm happy, but I'm not doing all the things I dreamed of doing--or any of them really. I'm too old, and too young.
   
3. I really really hate it when people suggest to me that I do something that I was already planning on doing. I don't know why, but it immediately makes me want to refuse.
   
4. My sex drive is all but gone. Sixteen, where did you go?
   
5. I think I might be a mean person. At least judgemental.
   
6. I deeply resent having to work full time to earn insurance for my chronic illness. Seems bass-ackwards to me.
   
7. I MS'd out of Grad school without even finishing 1 semester after doing a ton of work and 6 years of planning and longing. I don't think I'll ever go back.
   
8. I believe that a few generations after I'm gone, it will be as though I never was.
   
9. Most of my friends call me a "badass" or "courageous" or "amazing" because I don't let things stop me. I call that celebrating mediocrity. If I was those things, I'd still be in Grad school, or have something published, or be accomplishing anything at all.
   
10. I think I might love my cats more than my (future) kids. This sucks, because they almost certainly have a shorter lifespan. But I can tell them what to do forever, and they can't throw screaming tantrums in grocery stores.
    

So, while my life is not exactly boring right now, I don't think I have the time to type about it right now. I'll post at a later date, I promise.



Tag, crazy people!



Adventures in Domesticity

Stargazer's Observatory

Tea Party With the Hatter

Burning Tree

K.D. Bryan

It's been a while, hasn't it?

Erf. Long time is long. Okay so...

November 24th I saw a new neurologist. Timothy Vollmer, one of the leading neurologists in the field of MS. It was at an intimidatingly huge medical facility in Denver. Talking to the man was like reading a research paper, he had so many facts and figures. He was scary knowledgeable, and refreshingly take-charge. There was no "so what do you want to do? What do you feel comfortable with?" He told me what my best options were and started the process of getting me on a new medication. He was like a steamroller. But, it was so very encouraging.

I'm going to be getting on a medication called Tysabri, which blocks the immune system from accessing the brain at all. This means that, for a year, I shouldn't be having any MS symptoms at all. Why stop after a year, you say? Because there is a virus that lives in all of our bodies that will build up in the brain when it's sheltered from the immune system and han be fatal if not stopped; even if it's caught quickly it can cause permanent damage. However, there are 5 reported cases in 40,000 patients on Tysabri, and not one happened before the patient had been on Tysabri for a year.

I started a new job on December 10 ($4.35/hour more than I made at ListenUp!!!), and aside from the pay increase there's a lot of really awesome bennies. Excellent health insurance (+ vision & dental), 401k, life insurance, disability insurance, on and on. A positive and busy workplace and the days go quickly, even if I am tired at the end. However, I was (mis)led to believe that the insurance would be active the day I started, when actually, it's active the first day of the month following the beginning of employment. That left me insurance-free for 21 days, and we couldn't get the ball rolling on the Tysabri until then. And now that the ball is rolling, it's going to take up to 4 weeks to actually get my first dose.

In the meantime, my hands are still 90% numb. That's not likely to get any better until I'm on this new medication (if even then... there's always the thrilling chance that the damage may be permanent. However, that's not likely). Blech. I go through cycles of preemptively getting excited about having my hands back soonish and being depressed because I think that I've forgotten how to type, use screwdrivers or pliers, be a normal person with normal hands in any way. I've discovered that I cannot put on post earrings...though I wear earrings so rarely I wouldn't be surprised if I'd forgotten how to do that before now.

In other news, my best friend Carlie and my good friend Dan (one of B's groomsmen) have found love, happiness and bliss in each other's arms. They are both vomiting slimy pink fluff (contradiction in terms, I know... picture fluff made of gak) everywhere. Congrats to them, they deserve all the happiness in the world ^_^

And...that's all folks. =)

Long-awaited, most tedious update

I say tedious because I'm having to type with 2 fingers, deleting typos at least once or twice a sentence. My hands have gotten progressively worse since my August flare-up. I got on steroids at the end of September (oral, rather than IV) which actually helped quite a bit on all of my other symptoms (fairly standard Elly-MS-flare-up symptoms). However, my hands are now nearly useless. I drop everything I try to hold including phones, butter and needles. I can't open jars or my medication bottles. I can't put my hair up in an elastic. I can hardly go to the bathroom w/o help.

I'm getting on a new primary medication, b/c a blood test was done and they found that I've built up antibodies against my meds. But there was a paperwork snafu and I'm not getting it as fast as I should be (which was apparently supposed to be 2nd week of Oct).

I've come to realize that I'm a Darwinist, or whatever you call people who believe in survival of the fittest more than anything else. I'm somewhat ashamed to admit that I don't really believe in social programs that care for people who can't care for themselves. So, my moral beliefs are actually conflicting with my existence ATM.

It's just an uncomfortable place to be, morally, emotionally, physically. I don't know what I'm going to do if it doesn't pass. Aside from basic functionality, everything that I do that I love, arts & crafts & etc, require hands. :-&

So yeah, I'm in a little bit of a dark place right now. I made Branden and Carlie some kick-ass Halloween costumes, and consequently, didn't finish my own. My house is so messy I can't stand it. I haven't had time to eat "real" food since October started. All of a sudden, I can understand why 15% of all deaths in MS patients is suicide.

I can only hope that the party tonight makes up for all of it, and afterwards the stress level declines and I get my new medication and my hands magically get better. >_< Cross your fingers for me.

*lol* Okay, Hanna, okay, okay...

All right, I guess it's time for another epic update. First, though, I'll do Hanna's meme. My life in 6 words:

1. Reinvention
2. Art
3. Friendship
4. Experiences
5. Learning
6. Motivation

Those last 3 are necessities in keeping life interesting when your job (where you spend most of your time) is so pointless and dull.

Okay, so, life update. Branden actually got hired on at his work full-time a month early, because over his time there it has become obvious that he is by far the best programmer there. His pay went up to $45K and will go up again upon his graduation in December. We're starting to pay off our credit cards in earnest, and making payments on our student loans. Whee! I feel all growed-up. In other news, my manager has gotten a better job and is moving on: I am applying for his position. *quake in me boots* I've never been very good at selling myself. I don't think I'm going to get the job, but sadly, I still can't leave because their insurance policy is so good. *shakes fist* Damn you MS, damn you and your life-limiting required medication!!!

Speaking of MS, last Monday myself and a group of friends went down to Denver to catch Dark Knight on the IMAX. All that day, my left eye had been bothering me, as if there was something in it (which there wasn't). The next day, I couldn't even open my left eye, and having my right eye open for any length of time was torturous. I had completely recovered by the next day, but nonetheless, the trauma was enough to set off another mini MS flare-up. Now, my entire right hand and a good bit of my left are totally numb (which is making this fun to type, let me tell you), and the bottoms of my feet are all pins-and-needles-ey. Course, I hardly notice the feet thing because it's a fairly standard feature of a typical flare-up. The hands thing sucks though.

I just got home last night from a camping trip that started Monday (the second and likely last of the summer). It was ridiculously awesome, at least a good part because I was with a whole bunch of people I really didn't know very well. Carlie, Shad and Matt were there, so I had a good representative of good friends, but then the rest of them were all Shad's friends and family, celebrating two of the group getting married. The location was absolutely beautiful, the weather was, for the most part, ideal, and the company was great. It was awesome to get to hang out with Matt again, too. I was glad to come home, though. I guess camping really isn't my thing.

Funny things happened on the camping trip, but they're a little personal and I don't want anyone who was there accidentally stumbling on my blog and getting all miffed that I blogged about it.

I rode my bike in to work today from home in hopes that the exercise would relieve the MS symptoms. So far, no dice, but I should keep it up because that's typically what exercise does, it just takes time.

My little brother's moving in with a girl! Go Noah! Craziness. I feel old.

Okay. Going bye-bye again, see you all in September *wink*

*Blushes & waves*

Wow, now that someone's watching me--someone who other people watch, no less--I'm feeling the pressure to post. Maybe I should do a life update...


Okay, so I got a tattoo on my birthday. My best friend and I got the same tattoo in different locations on teh body, and it was quite an experience. It's my second tat, but the first was no big deal compared to this one. (My first one was a small, 50-cent-piece-sized Aries symbol on my hip.) I'm very happy to have it, and even knowing the repercussions, I would definitely do it again...

So, apparently, any physical trauma can cause an MS flare-up. My nurse had a patient who stubbed her toe really hard and had a "major exacerbation." I didn't know that at the time, however. Shortly after getting my tattoo, I started experiencing severe numbness from the armpits down. The worst part was that the bottoms of my feet were numb, and trust me when I say that if you haven't experienced it, you could not possibly imagine it. So I finally broke down and called my neurologist, who prescribed a regimen of steroids to bring the swelling in my spine down. Three-day IV of one kind (the name of which is slipping my mind pretty hard-core right now), followed by a two-week oral steroid called Prednisone.

So, a nurse came to my house and was very friendly and nice, and managed to get an IV in my arm after only one failed attempt. This IV was supposed to stay in my arm for three days, and I would change out the IV bag & do all the detailed medical stuff surrounding that. However, like an eejit, I went hiking the day after I got my IV in, and the needle crimped and was no longer usable. So another nurse came to my house, and this guy wasn't nearly as personable, and he stuck me twice with no success and refused to try again, sending me to the ER the next morning. Even the ER nurses had trouble finding a vein; apparently I have "shy" and "very tiny" veins. There was a total of six attempts for two successful IV insertions. I felt like a pincushion. I don't want to sound like a crybaby but getting an IV is incredibly emotionally draining, and every time they tried to get it in it was just a little more so. Especially when they were "digging around" with the needle (quote compliments of Branden) trying to find a vein. It makes you feel inadequate, somehow as if you're doing something wrong, that you should be doing something different or better. And the fact that you know that's irrational doesn't really help the way you feel. ANYWAY...

After the IV ordeal was over, my symptoms were pretty much the same as they had been beforehand. The nurse said that was to be expected. I moved on to the oral steroids. Their side effects included increased appetite, and I remember having hunger cramps continually no matter how much I ate. I bought a bag of oranges and ate four, one right after another. Also, my feet swelled up like tiny balloons. I spent all of the time I wasn't at work with my feet up on pillows. I even propped them up in bed, which is an uncomfortable way to have to sleep all night. Walking around was like torture, not painful exactly but so uncomfortable that I remember changing the way I drove because I didn't want to have to move my feet to brake or accelerate. I thought this was because of swelling, so I went to my PCP to see if they could do anything ($30 copay instead of $50, you see), and all they could tell me was that I wasn't swollen, and the sensation must be nerve-related. So... back to the neurologist I go. I got a prescription for Neurontin, which I am still on, and I've been on it for about six weeks. In the beginning, it definitely made my feet more bearable but not a whole lot more than that. In the last two weeks or so, I've been noticing significant improvement, and all I can say is OMFG FINALLY. (And whoo! I shouldn't take improvement for granted: there are plenty of people who are wheelchair-bound by MS.) I'm hoping to be all back to "normal" in the next week or two, and I think I'll cry with relief if I am.

AND... that brings us to today in terms of my health. Branden and I are about to sign another year lease at our place, bringing our projected total time here to four years; in the meantime, all of our friends are either in the process of moving or about to be moving. We are (or at least I am) helping a whole bunch with that. Two of our good friends (and possibly three!) are moving into our apartment complex (I've actually got mixed feelings about this, but shhh, don't tell anyone), so that'll be like having a party in my pants every day! (Um. Maybe not my pants, exactly. More like, my apartment complex. Much bigger than my pants, one would hope.)

There's an amount of drama in my friends' lives, but I don't really feel like talking about it (plus it's kinda none of my business). Hopefully that blows over soon.

I work at a high-end audio/video store here in Boulder, and that's going fine, nothing really to report other than the fact that they're fascist pigs and definitely don't pay me nearly enough. However, in the good-news sector, Branden recently got an excellent internship in a start-up company; his internship salary is $36k/year, and that'll go up in September (if/)when he becomes a full-time, "real" employee. He's the most flexible and innovative, if not most experienced, programmer in the company and they keep telling him what a good job he's doing.

We just got bikes, and we've both been taking the bus to work (and school, in his case). Bikes will make after-work mobility much easier, and it'll be easier/more fun to go do stuff outside. Built-in exercise! Yesterday B and I went and got bike accessories, including helmets, locks, head/taillights, handle grips, and a pump. The bikes themselves are in the shop, getting their Wellbike exam, and they'll be out no later than tomorrow, and allegedly good as new. The bikes are quite old, ugly, heavy, and low-tech, but I can't even SAY how much better than NO bikes they are.

We've recently started playing D&D 4th Edition, and I've gotta say I like it. I'm also jonesing for some MORE roleplaying; I have little creative outlet and it's killing me. >_< Oh, but speaking of which: My DeviantArt account.

Okay, I think that's it for now. Ciao, peeps, thanks for peeking in.