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

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.