Writing! Again!

Hey guys, so this is exciting!

I wrote 2,222 words yesterday.

The last words were “the end,” not because I finished the draft but because otherwise I’d have only written 2,220 words and well, you can’t have that.

I don’t know if what I’m writing is any good. I have a very hard time having a feel for that while I’m writing it. I usually imagine my future readers making fart sounds and rolling their eyes when they’re reading my feeble attempts at misdirection. But… it is not mine to judge, only mine to write it down as it comes to me.

I’m going to have almost twice the words for this upcoming Writers’ Group meetup as I had for the last, hooray! And honestly, if I’m going the wrong direction this time, I’m just going to finish the draft and give up on the damn story because there’s just no pleasing you people. (And by “you people” I obviously mean myself and the craft of writing at large. No personal offense intended.)

I saw the Ghostbusters movie this last Friday, and it was awesome. At a couple of different parts I had to remind myself that it wasn’t the original and it wasn’t trying to be, and with that in mind, I honestly couldn’t have asked for a better movie.

Oh yeah, then there was MuckFest.

Guys, MuckFest was great this year. The venue was perfect: flat, grassy, wide open. The weather was perfect: warm by 9am but we got out before it got hot. The mud and water were perfect: refreshing but unarguably on the warm side. We brought our shower tent and shower bag and man… that was great. I was the #1 fundraiser (*takes a bow*), so I got to have a hot shower, and there could be nothing better. That’s definitely a keeper.

The Racing Snails were in the top 10 fundraising teams, and Elly Conley was in the top 10 fundraising individuals! Thanks all my donors! I (obviously) couldn’t have done it without you!

On Sunday, Branden and I went to the Adele concert with my parents. She is a great performer, very very fun. We were sore and shell-shocked from Saturday’s Muckening, but we muddled along and had a great time. Overall, my weekend was packed but kicked ass anyway. Viva los Ghostbusters, amigos, and I'll see you when I see you.

Word count: 15,633 (㴑)

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

Home Improvement

It’s summertime, and I’ve got the bug.

Last winter, a picket fell off our fence. The wood was too rotten to hold nails anymore. Branden and I couldn’t adult our way through it at the time, so we just let the picket lie on the ground near the fence, whose gate was no longer secured and was now swaying in the breeze. Until, that is, our neighbor came over and screwed the picket back onto the fence, presumably because he was ashamed to be associated with such a pathetic structure so near his property.

After that, Branden and I realized that we couldn’t ignore it; we actually had a responsibility to our neighbors to keep the fence to at least the bare minimum of presentability.

But… it was also winter. So we resolved to deal with it once the weather improved.

Winter was extremely weird this year. We had winter-storm-warning-level snow storms all the way through May, then all of a sudden it was in the 80s (if not higher) every day. So, spring sorta rushed by, and then it was summer, and I said—Now! It must be now! before it gets more hot, before all the rest of the pickets fall off. We must take care of it!

Luckily, the pressure-treated posts and cross-bars of the fence are still in relatively good condition. (Not perfect, but they’ll last another five years, easy.) So we decided to do a 75%-assed job and only replace the pickets. My family all flash-mobbed my house over a weekend and got the pickets put up, lickety-split. Branden and I painted the whole arrangement with linseed oil over the remainder of that weekend and the following weekend, and I’m so proud of the result. It looks great.

But it may have created a monster.

After that, Branden and I agreed that it would be way smarter if our cat room had some kind of hard floor, instead of the carpet that was in there at the time. We were trying to keep it “clean” by putting down painting drop cloths when we had kittens, but here, “clean” is a comparative term. It was way, way too much trouble. So we agreed to lay down a floating vinyl floor… ourselves.

Well, we tackled that project this last weekend. I can’t believe how much we got done. We pried off the baseboards. We pulled up the carpet, carpet pad, tack strips, staples, the whole shebang. We bought paint and painted the room. We bought new baseboards. And finally, we laid down the floor. (Check out the kitten blog below for more pictures.)

We still have to put the light switch and outlet faceplates back on. We still have to put down transitions between the carpet and the vinyl. We still have to put up the baseboards. And, of course, we still have to move everything back into the room. But I am so happy with everything, so far. It looks so great, and I can’t wait for it to be done!

This may or may not be obvious to you, but I haven’t been writing much recently. I’m making myself be okay with that. I want to pursue other creative endeavors for the moment, and as long as I’m not being a human slug, I think that’s probably okay. Plus, once Becky’s all moved in, we will surely resume our weekly writing dates, which will get my writing back on track.

Thanks for hanging in there, friends and fans! Until Wednesday!

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

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.

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!

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. =)

*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.