Tuesday, August 31, 2010

Home Life

How do you tell the people you love that you just don't want to see them anymore? That you would like miles and miles of distance between you and them and maybe would like to go for months on end without having to hear their voices. That the things they do, being themselves, is just too much for you and you'd rather they were replaced by robots or sedated bears. How do you go about doing something like that?

Now it's not that I don't appreciate them. Also, don't think that I have stopped loving them. Still, I'm done. I'm out. Like realizing an episode of Two & A Half Men is starting on the television, I just wanna get the eff out and do a lot of avoiding for quite a while (for fear of a possible T&AHM marathon of awfulness). Thing is, there is really no good way to tell people that they remind you of the threat of having to watch a Charlie Sheen/Jon Cryer sitcom.

Also my problem is that I've got nowhere else to go. They're doing ME a favor by having me around. That's what family is for, right? Ugh! Just make me feel more guilty why don't you? It makes the situation worse realizing that I am the one who is the person who can't be avoided. I am the one who can't find a job and get the hell out. Now, it's not like I am not trying. I'm doing my best to work around all my lame medical issues to try and do something... ANYTHING.

Thing is, I haven't figured out how that all works. It's not like there's a map or something either. No manual. I'm feeling around in the dark and all that happens is I run my shin into the coffee table or I trip over rugs or something. Lots of injuries, setbacks and frustrations. I can't find my way in the dark, it's... it's too dark! Unreasonable scream! You know, excuse me if I am tired of my loved ones, sick of having them around while I fumble around like a moron.

So how do I tell them all that they are annoying the crap out of me by merely being themselves and living in my general vicinity? Well, my current method really isn't working. How are they supposed to know when I keep it all to myself and only talk about it in a blog that I'm pretty sure they don't know about? Maybe someone else has a better idea. Or maybe I can just murder them all... Meh. Too much effort and I don't have the energy. Thanks MS, you won't even give me the energy for some serious murdering.

Monday, August 30, 2010

Note to No One

The future is here, the future is now, the future is... frightening as all hell. Honestly, that is all that has been on my mind these days, my future. I'm talking about my future in concern with health stuff, monetary stuff, work stuff, living-situation stuff, relationships with people stuff. So, yea, pretty much the whole damn thing. And do you know what is the BEST conclusion I have been able to come up with? That I am scared as all hell.

I think mostly it all comes down to me feeling completely derailed. Things that may have been an option before no longer are and stuff that felt so simple to do just a little while ago are just so much more difficult. Just think about the idea that I get tired and fatigued just by standing for longish periods. Standing! That is stupid. My hands don't feel normal anymore? My hands?! Verdict: Stupid. The fact that since I have been working my crap job for the past year I have had TWO weirdo flare-ups of my MS probably due to working and stress. Yup, you guessed it - Stupid. So many easy things now are a challenge to me and all I can ask myself is, what the hell happened?

Whatever, forget about all the wrong turns or weird karma crap that caused me to get to this point, turned me down this path where a stupid disease gets in the way of me living a normal life. I don't give a crap anymore. What I do care about is figuring out a way to fix it. Get on track. Find out a way to get to a point where I can actually pay for all my medical expenses, pay for a place to live and all those things, and maintain a sense of self-worth that has basically been lost over these last few months/years/etc. It's enough already. I'm tired of feeling hopeless.

Question is, how to I fix it? What do I do? It's no longer the idea of getting back on track so much as finding a completely new track, a new path to go down that I can handle. Thing is, I'm really drawing a blank on this one. No clue. These days, not a whole lot makes sense to me anymore and everything is just overwhelming. Funny, the only thing that really makes sense to me anymore is the weird MS junk I have to go through. The stuff is bonkers, MS has no real answers or solutions, but I at least know I have it and there is nothing I can do about it. Everything else? All that life, home, employment, money and people stuff? Those are the things where I just don't know what to do anymore. I'm not above accepting help, I'm not above anything anymore really. It's just, if I could settle in to something that works and live life like a normal person, that'd be great...

Alright, I know, it's not that easy for anyone. Especially these days. Know what though? I don't care. I don't give crap about everyone else. It may sound selfish, but really all I care about right now is stuff getting better for me and those close to me. Maybe once I get myself taken care of I can work on helping out others, but for now I really need to work on my situation because it's been too damn long and all of it is really starting to take its toll on me and those around me. So I say to the universe, to the powers that be out there floating around, to the fates that decide where I go next, and I guess to anyone who wants to listen: Look, I could really use a hand. I'm stuck in this hole, I'm lost and I dropped my map somewhere along the way. If you could maybe help me out, I'm trying to find my way back towards civilization.

Monday, August 23, 2010

Discuss Your Diagnosis

So I've gone over this all before, but I wrote this for a new forum for MS'ers that I joined, asking about my diagnosis story. I wrote it there and figured, hey, I'll put it here too...

So, like a bunch of years ago I had the tingles on the bottom of mt feet. WTF, right? But whatever, I just thought I was sleeping weird or something. Anyway, I didn't actually do something about it until much later when it basically worked it's way to half-way up my chest. By that point I figured I was hit by some crazy mystery disease and I was gonna be paralyzed or something by the end of the week! So off to the emergency room I went and did that whole thing. They basically looked at me with puzzled looks, gave me a referral and sent me off for MRIs. In the end, after lots of stuff, I was told that a virus hit my spine. If the feeling goes away after 2 weeks or so, it was totally a virus... and it did. So that's what I thought. It was totally a virus.

So a few years later those tingles came back. Spring of '08. This time it spread through my body quicker. Also, it was only on one side of my body and that included my face. I figure it's the virus again, but I have medical insurance so what the heck, off to the doctor I go. This doctor she tells me I'm stressed...and fat. Um, okay. Thanks. I think I need a second opinion. The next doctor I went to told me I had arthritis and prescribed me a bunch of non-generic meds that he wanted me to buy at HIS pharmacy. At this point my frustrations took over. The tingles went away before, they'll go away again. I can't support these "professionals" who are basically looking for ways to either ignore me or steal my money.

Those tingles did go away, thankfully. Another thing that went away by summer was my job, a company-wide bankruptcy. Also gone was my medical insurance. What did come back? The tingles. Early '09. This time my limbs were the only things that were hit, but it was rough times. Turns out that I use my hands a lot, and things like writing or signing my name became impossible. At a job interview I was asked to fill out some papers and those papers looked like they were filled out by a kid in kindergarten. I wasn't surprised that I didn't get the job...or any other job for a long time to come.

Seeing as I had no insurance, and considering how things had gone before, I basically was ready to ride the whole thing out. Thing was, stuff wasn't going away as fast as they had before. Other stuff was happening too, like I was sleeping more than usual and my mood was (and probably still is) kinda erratic. Finally, my mom's sister had suggested to her I look into Multiple Sclerosis, something their father had apparently struggled with when he was alive. After some internet research I was fairly convinced I finally had found what was wrong with me. Something that a bunch of doctors couldn't see, I was able to see with a point in the right direction and Google. So off I went to get some insurance! Kinda expensive for someone unemployed, but also it could be worse. I had no official diagnosis so I was going in with no pre-existing condition. Otherwise, it would have cost me a LOT more, I'm sure.

The first appointment with my General Practitioner I walked, well, wobbled in with confidence. I had the magic words and I wasn't afraid to use them. Multiple Sclerosis! I have it, now gimmie my disgnosis please. Tell me I'm not insane please. So after a referral to a Neurologist, two MRIs, a needle to my spine, and discussion of what had been happening to me (over the course of a few appointments) I was ready for what I wanted. For what I needed to hear. On June 6th, 2009 I was given my official diagnosis for MS. Now, really, I had that weight off my shoulders from the mystery of it all back when I did all that online research. I was convinced I had MS once I learned about it. This was official though, and that's a nice feather to stick in my cap. I'm not a crazy person with some weirdo disease that no one knows. I have MS... lord, what now?

Well, there really isn't much of a what now. My hands never went back to how they felt before. Then there are the shots or whatever, and learning to take care of yourself (which I honestly SUCK at), but I think the biggest thing that has come from all of this is that it has changed how I relate to people. Mostly it has opened up this whole community of people that understand some of the stuff I am going through, which is pretty rad. Then there are the few people who are in my day to day life that I love dearly and who have supported me more than I could ever imagine. Discovering what care and love truly is and how much it means to me is something I definitely appreciate more than anything else.

Wednesday, August 18, 2010

The Search for Peace

I know this probably doesn't even truly exist, but let me tell you something I have been looking for. Something I have been wanting. Something that is missing from my life that I really need... Normalcy. A sense of things being normal. Ordinary. Simple.

Things just feel so complicated these days and it is like I have to either work around stuff, do things differently, or basically just settle for what comes my way. It's not like I am looking for anything special either. I'm not asking to win the lottery or become famous or something. I'd just like it if I didn't have to worry about having to figure out how to basically climb OVER a mountains while others just takes the train around it.

I know, I know, this stuff is teaching me how to appreciate the blessings of life or whatever. Sure, I've learned to appreciate things and people...but also, I've had enough. It's starting to create ill-will and resentment. Bad feelings. I'm tired of bad feelings. They're exhausting.

So if you happen to have some "normal" lying around, some sort of way of making my life seem more normal than weird and difficult, could you maybe hook me up?