cassy_g: (Default)
[personal profile] cassy_g
So, I haven't written in a long time, mostly because I am still trying to adjust to a lot of changes in my life. But before I get into all of that, I give you Korean baseball fights, which I couldn't have shared without [livejournal.com profile] pig2k3 showing it to me first. :) May I suggest letting it compeltely load before trying to watch it.

Korean Baseball Fight... Seriously... WTF?

Now, onto the more important stuff. I have been back to my neurologist, and also my general practitioner since Dragon*Con and the really incredible news is that I don't have MS. I do however have Fibromyalgia (FS) and Chronic Fatigue/Immune Dysfunction Syndrome (CFIDS). As my GP put it, you can read yourself silly over both of these and not feel like you know any more than when you started, but basically my immune system has gone on holiday and my body has forgotten how to convert and store energy properly, and I have pretty constant pain of varying levels depending on the day. I am going through various meds at the moment in the attempt to get my symptoms under some sort of control, but so far, it's only been a moderate improvement.

This is mainly due to the fact that I have to learn to adjust everything that I feel makes me who I am. As long as I can remember, I have been constantly in motion of some sort, mentally or physically, and sometimes both simultaneously. I have been a working insomniac, in that when I couldn't sleep, I would work more, since I was a small child. And I guess, really, in retrospect, I should have realized something was seriously wrong when I started sleeping more than 10 hours a day, every day, without meds, and without wanting to argue that I didn't need the sleep.

For me to stop what I am working on and lay down and do nothing, even in the middle of something completely goes against every single grain in my body. And the really vexing thing is that it doesn't just apply to "work", even things I enjoy, like hanging out with my friends, or playing a video game, or even just reading a book all can fatigue you in one way or another. And because I want so very much to maintain some semblance of who I am, I still push myself too far. Sometimes I feel like if I could just go a few more minutes, then it would all be ok, but then when I do that, I wind up paying for it either by being in extreme physical pain, or being so fatigued I can't get out of bed for two days.

As an example, on Saturday, [livejournal.com profile] astralfire and I decided we would go to Anime Weekend Atlanta for a little while, and then we were going to go to a friend's house later that evening. At the time, I didn't have a wheelchair, but I really wanted to go, and felt that I could manage the short time we would be there on my own. We got to AWA around 4 PM, and walked around until about 5:30 PM, then went to dinner until around 6:30 PM, then we walked around until 7:15 PM or so when we found seats to watch the Cosplay Contest from. By the time we went to dinner I was feeling really tired, like I could go to bed right then. But I was having a good time, and wanted to stay, and so I just sort of ignored how achy and yuck I was feeling. Unfortunately, when you stop moving is when the trouble usually hits you.

Within about 20 minutes of sitting down to watch the Cosplay Contest, my leg muscles began to tremor, and all the joints in my lower body (even the ones in my feet) started to burn. Because I had been using a cane to help me keep my balance and walk with, soon my arms and shoulders were in on the whole gig. By the time the Cosplay Contest was over around 9:30 PM, I was in what can only be called extreme pain. Getting to the car was even more complicated as all the down escalators were shut down, and it necessitated me waiting (while standing) on an elevator. [livejournal.com profile] astralfire left me at the entrance and walked to the car and came back to pick me up, but of course, by then, I had far over pushed myself.

Since I haven't asked for any pain meds, other than the one I am taking for neurological pain (Neurontin), I have just been clinging to the Vicodin that was written for me back in June (and that was only 20 pills). I went through quite a few of them at Dragon*Con, and so I am down to the last one, which I completely refused to use. Because of that we stopped at a Walgreen's on the way home to get me some Aspercream in the hope that it might help some. As it turned out, they have wheelchairs there, so now I own one which rides in the back of my car for any impromptu walking excursions.

Saturday evening was brutally miserable for me, and I do plan to talk to my doctors about getting something for days when I have gone too far and am in such pain. Fortunately, I eventually passed out, and slept pretty hard until the next morning. I pushed myself again, though not so hard physically, on Sunday, and when I went to bed Sunday evening at 10 PM, I crashed out completely. It was 3 PM on Monday before I was able to get out of bed again (yea, I slept for 17 hours).

It feels unnatural to me to have to rest so much, and limit myself so drastically in what I do. Though I realize it's something I am going to have to adjust to, right now it is making me very fussy.

To that end, I had a meeting with the Chairman of Dragon*Con yesterday. I really love Dragon*Con, but it was wearing me down before, I was just taking on too many things. After a long talk, it was agreed that I would stay on, doing the publication work (Progress Report, Program Book, Ads, etc.), and that I would remain the Senior Director of Public Relations (only 6 directors at the moment), but I would let go of all the other things I was doing for the show.

That means I will no longer be working on the guest selection committee, scheduling, [livejournal.com profile] astralfire's second for the tracks (he will be getting a new one for that and scheduling), the main website (other than biographies as needed for the various publications), nor will I be the "go to" person and liason for staff, directors (outside my own), bands, guests, or agents. What that means is that the days of everyone coming to Cassy to help solve their problems are over. I will be happy to point people to the correct director or senior director, but I won't be doing all the "leg work" I use to do.

In addition, I am picking up two "seconds", [livejournal.com profile] maitayne, who I will be teaching all of the publication work to, and [livejournal.com profile] eugie, who I will be training as my backup for my Senior Director duties. Having them as backups was a vital part of me agreeing to stay on at the convention. With them learning what I do, it means that if it becomes imparative for me to take a break, or lay down, I will be able to do so. Major thanks to both of them for agreeing to be my seconds!

And that's where I am, fussy that I am having to learn to cope with being ill, but happy that I finally will have help, and a very defined line of what I am and am not responsible for at the show. It is going to be a major learning experience for me, but I look forward to seeing where the next year takes me with all of these changes.

Date: 2007-09-26 07:57 pm (UTC)
From: [identity profile] lady-kathana.livejournal.com
I'm going to miss not working for you directly, but your health is FAR more important. And I'm glad its "just" FM and not something more serious or progressive.

Urg.

Date: 2007-09-26 09:42 pm (UTC)
From: [identity profile] mtfay.livejournal.com
I've long been around a woman with Fibromyalgia. She takes like 5 drugs for pain control and sleep. One thing, little and not very scientific, that seems to help her when I can get her to take it is fish oil capsules. The anti-inflamatory properties of the omega 6 fatty acids seem to do some good. But she doesn't have chronic fatigue so I don't know how much it would help.

Date: 2007-09-27 01:40 am (UTC)
From: [identity profile] bevlovesbooks.livejournal.com
I've gotta admit that I'm relieved that it's not MS. I have a coworker that has it, and she has good days and bad, but she's learned to live with it. I hope you get to a good pain-relief point with the FM and CFS.

I'm sorry that you won't be AS involved with D*Con as you have been in the past, but I always have thought that you do too much. Taking on fewer things is a good thing, I think.

*hugs*

Date: 2007-09-27 12:57 pm (UTC)
From: [identity profile] darkfirewolfe.livejournal.com
As a person who lives in a swarm of crazy business, I can related your frustration about having to not "do do do" and sit. I'm glad to hear that you don't have MS and that you are cutting back with DragonCon and I echo the hope that you work out the pain relief stuff soon to manage this.

::sends love::

Date: 2007-09-27 04:44 pm (UTC)
From: [identity profile] jjhunter.livejournal.com
It's good to see you post.
Hoping things get better.

July 2009

S M T W T F S
   1234
567891011
12131415161718
192021222324 25
262728293031 

Most Popular Tags

Style Credit

Expand Cut Tags

No cut tags
Page generated Sep. 26th, 2017 06:11 pm
Powered by Dreamwidth Studios