Thursday, July 11, 2013

Moving Along

WARNING: BITCHERY AHEAD! This is a whiny post.

Just a bit slow.

Summer is the hardest time of the year for me. The heat alone is extremely bad for my condition, and while we've been pretty lucky here to remain somewhat temperate, we're looking at purchasing a newer home with air conditioning soon. Maybe next year.

Another thing that summer brings is summer activities. These are extremely hard for me, not only because of the heat, but because of the people and involvement. People go on vacations and so on, which means either they want me to play host or want me to visit, and I've come to the point in my condition where I'm able to do neither of those things.

Most people are fairly well aware of my condition by now and take it into consideration when inviting me to BBQs and other fun summer things, but that doesn't make it any less disheartening. Another thing about summer that's difficult for me is I have to keep the windows open for the air flow (to keep the house from heating up, which as we've already established is very bad for me), and that means I hear every car driving by, every screaming kid (and this neighborhood is full of screamers) out of school, every dog barking, every single noise out there. This is problematic for me because fatigue is a huge part of my condition and I absolutely have to lie down during the day just to function. It's extremely hard on me when I finally get to rest and am awakened by the piercing shriek of a neighbor kid or a barking dog.

Fourth of July was NOT a fun time for me. I've come to refer to the first week of July as "Hell Week," because everyone is setting off illegal fireworks in the days leading up to and following Independence Day. (And I mean illegal ones - as in the ones not allowed in this state that they go to the Reservation to get or across the state border to get and set off.) Someone's out there right now setting off something huge. It's pretty far away, though, so I can't tell if it's a big firework that they've saved from last week (LAST WEEK PEOPLE! KNOCK IT THE FUCK OFF ALREADY!), or if someone's out with a shotgun being a dipshit (it's dark out, so I really don't think they're shooting at targets). We have a lot of rural property out here, so a shotgun wouldn't be unlikely. As I've heard it three times over the last half hour, I'm betting on an M-80 or some other illegal firework. (ETA: Yeah, they're fireworks. *sigh*)

I hate stupid people.

I used to love the Fourth. Now it fills me with dread. It's loud, annoying, terrifies my animals, increases the already-doubled summer population, screws up traffic and idiots set off fireworks for days if not weeks afterward. (Last year I yelled at some neighborhood morons for scaring the hell out of my animals in AUGUST with their stupid fireworks!) But it's over now, and with it the first half of the year. I am all but living for fall, when the temperature drops and the kids go back to school and I can close my windows and everything turns inward again.

I was an introvert before my condition. I'm even more of one now. I'm all but a hermit now, and I like it that way.

As I said, we're considering a move next year, either to another part of the area or another part of the world entirely. We'll see. A lot of it will depend on finances and feasibility, but we definitely foresee a move in the not-too-distant future. I've already been looking at houses online.

On another note, today I started a new treatment. It's called Tecfidera (formerly BG-12). I've been waiting for it for over a year, as my former treatment was an injectable medication I didn't take so well to. Tecfidera is an oral medication that replaces the injection, and has been shown in studies to perform the same function of my injectable a whole lot better, and then some. My neurologist thought Tecfidera would be a good fit for me, and I've taken my first dose today.

I tolerated that first dose well. It's a starter dose that I'll take for a week, then increase to the full dosage. I'll blog any reactions or side effects of note here. I've had my preliminary baseline bloodwork (as this can mess with your white cell count, making you more prone to infections), and have an MRI scheduled for next week to see the current condition of my brain. So far I've only had two lesions of note that I'm aware of, and this medication is supposed keep the progression of my MS in check.

Here's hoping.

I've been reading a lot here and there about MS, and most of the things I've been reading are from people who are in wheelchairs. People who know me send me links and such when they come across them, and while there has been a lot of hopeful things written, most of what I'm seeing is from people whose conditions have deteriorated to the point at which they need a wheelchair.

Fortunately I'm not in this position at the moment. I use a cane and need some help walking sometimes (especially with stairs), and while I can't go very far or very fast, I'm not in a wheelchair yet. Everything I'm reading, though, pretty much says "I was in a wheelchair within 20 years of my diagnosis." Okay, fine, but! I was diagnosed early and, forgive my sexism here, am a woman. Most of those I've been seeing in wheelchairs are men, and men are notorious for not going to the doctor when something is wrong. It's an unfortunate fact that men don't get the treatment the need as early as women do, due to the illness not being caught as early as it is in women. (Sorry, guys...but it's true.)

And that's not to pick on men. MS is also notorious for being hard to diagnose. The early symptoms can all be explained away (I did it, too! The only reason I got diagnosed as early as I did was because the last doctor I had to be prodded into seeing knew the symptoms I was describing as he was familiar with the disease. Before that doctor, one referred me to a psychiatrist for "stress" and basically told me it was all in my head [he was right, after a fashion, I suppose] and another sent me to a sleep clinic where I was diagnosed "narcoleptic." in various ways, and men aren't very vocal about their various issues. It usually isn't until their MS is in the later stages and is more recognizable/troublesome that they finally go to the doctor.

I was lucky in so many ways, and I'm aware of that. But lucky or not, the reality is that, unless a cure or serious treatment is found for this illness, a wheelchair is in my future.

But today is not that day.

Now it's time for my second dose of my new medication. I'll let you all know how that goes.

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I don't want any advice, "try this/have you tried," or any medical opinions. Anything else, feel free to comment!