Generalia

About three months into the MS drug. I hate it. 2 months, 2 weeks and 4 days into the constant headache. Another week and I'll be talking to the neurologist about my options (changing medication, or getting something to give me a little respite from time to time.)

Injection site reaction isn't improving; the first half-hour afterwards is sheer agony, and the several days following is a lesser misery. The thought that perhaps this drug isn't working, that the lesions haven't slowed down at all, is something I carry with me all the time. It's a little black rain cloud that follows me through each and every day. I try to be optimistic, I really do, but the constant pain wears down my edges, and makes me irritable and sad and hostile. I think that, given the idea of the drugs in general, I'd be happier if I KNEW something. Knowing that the pain was short term, and saving me from something ugly down the road, would make it better. It's impossible, though. The very nature of the condition, the nature of the "treatment" -- it's just a stall. Nothing stops it. The drugs slow it down, but even slowing it doesn't won't save me from the horrible things that could come. Even if I only get one more lesion EVER, in the wrong place it could do something terrible... and permanent.

I know that it could be worse. I could have something that could be guaranteed to kill me. Up until I started on the meds I didn't have this self-pity problem either. I feel like my quality of life has declined drastically as a result of trying to treat the condition, and I'm just so freakin' unhappy about it. The treatment feels worse than the disease.

I get that I just need to wait it out. The headache will (probably) go away, I'll adapt to the shots at some point. There are new medications and treatments and discoveries all the time, and MS is a highly funded, well-researched disease.

That doesn't mean I want it. =(

Week 4

Fourth week of meds started yesterday. Thankfully, the horrific side effects seemed to have relaxed. I'm not feeling the anxiety or the depression, I'm sleeping much better, my outlook in general has improved dramatically.

The new effects are slightly more tolerable, although still very annoying. My injection sites are generally fine the first day, and then by the day after they've turned into this huge, red, itchy, painful welt things. That lasts 4-5 days, so just about the time a site is getting better, it's time for another injection in the same area. Yay!

I'm also noticing a decrease in my stamina (can't work as hard or as long as I'm accustomed), but I think that will get better as my body adjusts. I also bruise easily. Like, INSANELY easily. Like, "OMG don't let that insect land on me aaaaaaah!" easily.

By and large, better. Still not at home in the reality of this new thing. Not comfortably settled into the changes it'll mean, and worried about the person that will come out the tunnel on the other side. I'm optimistic, though. =)

Week 1 of M.S. Drugs

It's officially Monday, which means I've completed my first week of the Copaxone therapy (only several hundred more weeks to go.)  Let's review.

Monday's injection was done at 2:30pm with the nurse during injection training. Used right arm as my first since supposedly the arms are the worst spot. It certainly lived up to my expectations, that shit is brutal. Deep, throbbing, burning, stinging pain, lasted about two hours.  At 5 I had an MRI of my spine done (short version: yeah, that's fucked up too), and this is where I felt the start of a week's worth of anxiety (so far.)  I hadn't been bothered by the MRIs up to that point, but they slid me into the machine and I couldn't stop sobbing.  I felt this clawing, manic desperation to get out RIGHT THE FUCK NOW. I'd force myself to breathe and feel a little better for a minute, then the whole cycle started up all over again. Left the hospital around 6, cried the whole way home and most of the night.

Monday night I had a night terror about walking into the kitchen to kill myself. Woke up on the floor surrounded by cutlery (no utensils were harmed in the making of this post.)

Didn't go back to sleep cause I was pretty freaked out. Tuesday's shot was in the abdomen, hurt just as much as the damn arm did. Spent most of the day crying and exhausted, found out the results of the spinal MRI, felt like it was a major blow even though I was kind of expecting it. Started noticing that my mouth tasted icky (no resolution on that, still tastes gross) and stomach was in absolute torment (again, still happening.)  Stayed up *really* late hoping to be too tired to dream, set my alarm with a 30 minute snooze and planned to use it all night. Dreamt that there were bugs in my skin, woke up scratching the hell out of myself. Yay alarm. Didn't go back to sleep.

Wednesday felt all of the above plus my lower back ached, my hands were shaking, and I had a dizzy spell on standing. Called the nurse who said I needed to come to the hospital right away. spent two hours with the nurse, who I think was trying to make sure I wasn't legitimately suicidal, had blood tests, told to stay on the shot but to ask my therapist for an anti-anxiety med. Went home, worked for a few hours, took my shot in my butt, had one of the worst nights I've ever had, not drug-related, but it's not really any of your business. Was up almost all night again.

Thursday was crushing depression, a sense that nothing will ever be OK again, plus the same stuff as above. Shot was in the right thigh, just as bad as all the other places. Had to talk myself into pushing the button, then cried on the bathroom floor.  Saw my therapist at 6, who reminded me that she can't prescribe, told me to call the on-call at the hospital and get something that night, and that I needed to call her on her cell every day over the weekend.  Someone evidently seemed unstable. Called on-call doc, was told, "too bad, so sad, can't give you a script for that. Maybe you should just try something relaxing?"  Assholes. Another sleepless night (for those of you counting, that's 4 in a row now).

Friday AM called the hospital, they set me up with valium and an anti-depressant. Walked to the store and grabbed my scripts, got my hair cut, mood was definitely better. Shot was left arm, same reactions as before.  Mouth still icky, tummy still in turmoil, hands still shaking.  Popped a valium, managed to sleep for about 6 hours. Fedex guy woke me up at 8. Fuck them and their punctuality.

Saturday was good (shot: left side abdomen), same general stuff as Friday. Same with Sunday during the day (shot: left side butt), except even with the valium, I didn't sleep; it's Monday morning at 5 as I write this.  Had another med-based round of anxiety, followed by more non-med misery.

I think the drugs will help. I know that they're putting me through a special version of hell, and there have been things that are definitely exacerbating the whole mess. It's hard to continue thinking it's worth it, and I can understand why so many people stop taking the meds.  The worst part of this is I just want to feel normal and happy, and I feel robbed of the ability to be either of those things.

The MRI Journey

Regardless of how careful you are with your clothing choices the day of an MRI, they will, undoubtedly, insist on MAKING you wear hospital garb. I wore clothes without a speck of metal knowing that I couldn't wear it in the machine. They still made me put on their robe-muumuu-cloak thing. You also get a totally kickin' pair of earplugs, too. (Note: if you're going in for an MRI and they offer to let you listen to music, you should probably just skip it. You won't really be able to hear shit over the noise, and you'll catch two words here and there and it'll annoy you.)

I'm too sexy for my smock.

There was a difference with contrast injection this time around, and I'm not sure how I feel about it. The first time, they pulled me out of the machine, gave me the contrast, and then pushed me back in. It was kind of a mini-break from the MRI experience. Almost like visiting Vatican City while you're in Rome. This time, though, they set up an IV port in my hand, and then remotely injected while I was still in the machine. The plus side is that you don't have to get rearranged to go back in, the bad side is you're in the machine THE WHOLE TIME. The IV insertion was also kinda crappy, because they use a huge needle to get the tube into your hand, and then eject the needle itself (remember, no metal!) Once you're wired, I would say refrain from doing the hand jive in the hallways.

This damn thing makes mosquitoes look awesome.

Oookay, so you're all IV'd up, you're lookin' fly in your hospital shit and earplugs, now it's time to hop into the machine.

Fuck you, Optimus Prime.

I was hoping that the MRI itself would be on of the open-variety, but it wasn't. It's actually smaller than the machine I was in before. Evidently the person hole in a 3 Tesla MRI is a lot smaller than person hole in the 1.5. It was substantially more cramped than before, but on the plus side it's slightly quieter and thunks quite a bit less.

If you've never had an MRI and are curious, they're incredibly noisy and not for the claustrophobic. You probably already knew that. What I'm guessing you DIDN'T know is that you'll FEEL the magnets doing stuff while you're laying there. They thunk and buzz and shudder and do all kinds of things. I would imagine that it's very similar to living inside the vibrator of an actively masturbatory female. The first time it happened to me I thought the machine was breaking down. It's a little frightening. Don't freak out, it's totally alright. Just think of it as a free massage! The technician doing the procedure will talk to you, too. Both times, the tech kept me updated on how many picture sets were left, how long each set would take, and frequently asked if I was alright. This time 'round, I ended up doing two sets of scans (with and without contrast), and the first set of images was split into 16 seconds, 1.5 minutes, 3 minutes, 1 minute, 3 minutes and 3 minutes. Then the tech did the contrast injection remotely (which was INCREDIBLY cold, and made my mouth taste like metal. Weird.), and she kinda cheated and just told me we were about 12 minutes out.

Then it was up to have the consult. This is the single most awesome thing about using Swedish. My MRI was scheduled for 11:30, and my follow-up with my doctor was at 1:30. No waiting over a weekend and worrying about what turned up.

So, that's the trip in a nutshell. I wanted to leave you with this: if you wake up with a mild case of amnesia in a strange hospital, and you don't know where you are, there's a REALLY easy way to tell if you're in Seattle or not.

Anxiety

Tomorrow is my 4 month check-up. MRIs will happen. Doctors will be spoken to. Many forms will be signed. The anxiety of waiting for the appointments to happen is far worse than the appointments themselves.

Even having gone through and MRI already, I find that I'm more freaked out about it than I was at first. I attribute this to a couple things; primarily, the first time I had my brain peeked at by giant magnets, the doctor told me, "Don't worry. This is just standard procedure, everything will be fine!" Yeah. Everything was NOT fine. I think that's the other primary cause. I KNOW something is wrong already.

I know that there are lesions, I know that I've experienced some other minor MS-y type things (itchy hands, some numbness from time to time, nothing that lasted more than half a day or so), so I fully anticipate that they'll take their snapshots and more things will be wrong than last time.

("And if you'll look out the window to your right, you'll see the largest lesion in the area!" "Ooooooooo." )

I also worry that something is wrong in my head that they didn't anticipate. It would be just the BEST THING EVER to find out that other shit was all wonkified. I think that mentality is from waiting for "the other thing" to happen. The second major event. The visual disturbance didn't bother me all that much until I knew that it wasn't a bad prescription, or a torqued contact lens. Once you know your brain is doing things it shouldn't, it changes the way you react to what's happening to you.

Right now I'm still in that stage of being monitored, where they wait for the second major exacerbation (which, I might add, doesn't include itchy hands or minor numbness.) Knowing that anything could happen, and I literally mean just about anything, is an incredible stressor. I would rather just have it happen and be done with so I can BREATHE and not be in this crazy state of flux.

I'm going to try to take pictures at the Swedish facilities tomorrow. I've not had an MRI there, and I think that from their literature they have an open MRI machine. I'm not entirely sure they'll be keen let me, but they underestimate my ability to throw a massive tissy fit.

For Reference...

Here are the first two scenes I created, "Monster Guy" and "Frogs in the Woods." I know you are SO IMPRESSED by my creative naming scheme. Blow me, it gets the point across. ;-)

Both were created with crappy materials. Monster ended up being OK, I think mainly because of the monster's kick-ass tinfoil cloak. Frogs, however, ended up being really, really rough. I want to redo that one because I think there's a lot that can be done better. Both of these were done within a box, like a shoe box or something from Amazon, but working within the constraints of that space is frustrating. I prefer the newer, more open approach, since I can sprawl out as far as I want (or as far as my little work desk will allow.)

The Making of a Scene Abstraction

So I've posted several photos of scene abstractions, and I've had a couple people ask how they're made. This abstraction, called "Teddy Bear", was pretty straight forward; not a lot of clay work involved, so it went quickly.

As with all my abstractions, step 1 is "have bad dream." The whole point of this process is to give reality to the weird shit in my head, and as a result, remove the sense of fear from it. It's really hard to be scared of something when it's teeny tiny and you can squish it in your hands. *squishsquish*

Step two is to make a quick, down-and-dirty concept sketch, so I have a general idea how I want it to come together. Of all the steps I skip, this is by far the most frequent. A lot of times I just wing it.

Step 3 is to start the clay work so it can be drying. This abstraction had very little clay work at all, just the teddy bear, so it was really easy. This is the most time consuming part of the entire thing; for Cubes, the clay bits took probably 10 hours total. BruuuuuuuTAL.

After the clay is formed and drying, I'll generally start on the backdrops or ground pieces, depending on how complicated they are. Teddy Bear called for a hallway type backdrop with dark, shadowy doorways.

Once the backdrops are finished, I can generally start painting the clay pieces. The namesake of Teddy Bear is pretty small, so he dried super fast. For Cubes, I ended up sticking the clay into the oven while I worked on backdrops. Or drank. I think it was drinking.

INTERMISSION! *music*

Whew, that was a nice break. Hey, our little bear is all snug in his first coat of paint, so now can give him his detail.

Now you throw all that shit together and setup for the picture. This takes a while. After I setup what I THINK the final scene will be, I'll take a peek through the camera and decide that I must have been snorting blow off a hooker's stomach, 'cause damn that looks like shit. Lots of fiddling ensues. I hum, I haw. At several points I decide that this was a stupid fucking idea, and think about chucking the whole thing into the trash.

After I get over my little mini freak-out, I start snapping pictures. I take a LOT of pictures. Teddy Bear was pretty easy, so I only took about 25. Cubes ended up being 47. Frogs in the Woods was closer to 70. I'll delete a lot. Some will be blurry, or too bright, or too dark, or wtf sepia, or any number of things that make them useless. There are usually a bunch that are pretty close with minor differences, so I open them up in GIMP (the cheap-ass version of Photoshop) and start looking at the details up close.

I also, admittedly, clean them up with GIMP. There are usually little problems, like flaring or rough edges, that are almost impossible to get right when you're working with clay and construction paper. It's just easier to tidy with software.

The end result is something like this:

I love doing these. They're crazy time-consuming (Teddy Bear was probably the simplest one I've done to date, and he took about 3.5 hours, not counting the time it's taken to write this post) but they're also very cathartic. Plus it's kinda fun to breathe life into something that was just rattling around in your head. =)