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.

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?

Internet is Magic

The Internet is an amazing thing-a-ma-bob. It opens up a world community and allows for others to share ideas and opinions. Seems though, the most of the time people are very unwavering in their beliefs and so a discussion of opinions almost always seems to reach a point of argument. The magic of the Internet though, lies here -

Thanks Internet! Your funny pictures make me LOL

People...

People make me sad a lot of the time.

Maybe I am just such a different person than most people. To most I am just a funny person. Then they figure out I am fairly reserved and pretty guarded. What some people end up realizing is that I am actually something else altogether. I'm emotional, caring, protective, and sympathetic to those I hold dear. I give a lot of myself to others even if they don't realize or appreciate it. At the same time, I am also pretty moody and touchy about stuff. Sensitive to what is said to me or how I'm treated. I hold friends and people I care about in high regard, so when I feel like they don't do the same I end up feeling pretty hurt.

Sometimes I question if it's all in my head. Maybe I overreact or I judge others harshly. Should I expect so much from people? When I ask these questions, usually I end end up getting angry with myself. "Yes, you ARE overreacting. No, you SHOULDN'T expect so much from people. You are a crazy person and you're lucky enough that anyone would even want to spend a small amount of time with you!" Somehow I've turned it all around on myself. This makes me figure that yea, it probably is just my issues and not the fault of others.

So the question becomes, do people make me sad or is it that I make myself sad for caring about people?

Enough Space

I understand that I am extremely blessed. In times such as these, to have a place to stay makes me a lucky man. When I have a job that will barely let me work at all, resulting in me only making enough money to pay off my medical insurance bill each month, having my family to keep me from being homeless is something to be grateful for. Too bad I am an ingrate.

Seriously, this situation is just NOT working for me. It is beyond frustrating to be here and have no space of my own. I can't even keep all of my clothes in the same room, let alone a room I can call mine. I have a bed in a corner with a small bookshelf next to it. That's basically it. Everything else is either stashed or stored or in a hallway or under a bed. Of course I am not unwelcome here, but really, how am I supposed to feel when I know I just don't fit in?

Want to hear something sad? I basically stay up late at night, not because I am a nite-owl or anything like that, but because I am waiting for a moment where people finally go away to their own beds and I get a moment of peace. I have to wait until 1 in the morning just to escape, feel like I'm not surrounded. I really just want some time to sit, alone, for a moment or two. I need that feeling of just being by myself. Solitary.

Maybe it's because I've basically had to share space for my entire life. Except maybe the first 4 or 5 years of my life, I've never had a room of my own. Okay, I've gotten a space of my own maybe once or twice, but none of those situations ever lasted even close to a year's time. Those of you who have, well, I really hope you appreciate it. Cause seriously, I'm starting to think that the fact that I have been deprived of it for most of my life is really taking a toll.

I'm...I'm upset.

There's really not much else I can say. Or do.

Request

I have one request... How about I get some effing work, huh? Screw this bullcrap I have right now. Someone just give me an actual job already, would ya?

Wiggin' Out

I'm starting to freak out about money. That's the one thing that has always made me nervous. I know I'm not the only one, and especially in these economic times it's something that has lots of people worried. At this point though, it's gotten to the point where it's one of the things that I am constantly thinking about. Obsessing over something so negative just isn't good, not at all. Stress isn't good. That's on the first page of the MS Handbook. That and "You might wanna wear kneepads 'cause you're probably gonna fall".

It doesn't help that my job just isn't compatible with me and all my lameness. I always feel like shit by the time I finish for the day and I'm fairly certain all the crappyness is what led to the MS acting up and screwing up my vision. Now I have all this anxiety about going back. The last thing I want is to end up with some permanent damage. It's not like it's a ridiculous thought either. My hands are a constant reminder of what permanent damage feels like.

I think a new job, something at a desk or whatever, might be just the thing to help. Thing is though, I can't seem to find one. At least find one that would want me. Turns out I'm not the most desirable employee. Who knew?! I guess someone with a twisty, creative, illogical brain isn't really compatible with the places that are hiring. It's gotta happen sometime though, right?

So all this stuff has my mind in a panic and I feel myself starting to scramble. Of course I've been doing the looking for a new job thing. I have been actively doing that bit for a while now. I have also been thinking about selling some of my stuff. Thing is though, I really don't have much to sell. I could have a yard sale or something, but that's really not going to get me much. No one wants some crappy DVDs if I don't even want them anymore. Porkys anyone?

I did decide to sell these keepsake/gift boxes though. They are made from vintage record covers and are really cool. I made them for myself and I've made them as gifts too (with more gifts inside!). I am taking the four I have left and putting them up for sale on Etsy. Started my own shop and everything! I guess if they sell I can maybe make some more and sell them too. It'd be nice to actually MAKE some money rather than lose it to medical expenses and the like.

Oh, also, on a side note: I've started a site to highlight some of my photography. The web address is davilaphotography.wordpress.com. I figure I can put up some of my work and possibly get people interested. Maybe eventually I can sell matted/framed prints or something. Would you wanna buy one?

Public Opinion

I've always been pretty crap in social situations. Everyone who knows me, knows that to be true. It takes more than just a first meeting to see the person I am and it takes A LOT more to see the person that I can be. The only thing is, it takes more than one or two contrived social interactions to get to that point.

I won't say I don't care completely what other peoples opinions are of me. Whether it's trying to make new friends, maintain the ones I have, or make a good impression for other reasons, people and their opinion of me can matter. At this point though, I can't be bothered to worry about such things. I've got enough on my mind to care what anyone thinks of me.

Of course I'm not gonna be dead about it, and just not care. The mean stuff is still gonna hurt a bit. Right now though, I've got it all narrowed down. I hold some people and their opinions way above everyone else, and in doing so, I'm able to care a lot less what others think. As long as I have those people who see me for who I am, love me and care about me, I could really give a damn about anyone else or what they think.

Now it might be selfish or self-centered to also push other people and their feelings aside in the process. All just to maintain my own sense of happiness and stability and reach that place where I can maintain a truly happy life. Thing is, life is way too short and way too unpredictable to worry about every single person and how they feel and what they will think. I have to look out for MY-self and for those that I love above all else. If I can do that, I'll definitely be able to be proud of myself.

I Make Stuff

Adventures In Bloggersitting

Blogging is hard. Not like serious manual labor hard or curing diseases hard or anything like that. I'm just sayin', keeping a blog from drifting off into obscurity is pretty damn difficult. Maybe I'm finding my life becoming so uninteresting that the best stuff I can come up with is "…" or even "um…uh, yea." AWKWARD PAUSE!

It could be that my life is TOO interesting. A secret life of mystery and intrigue. Spies in disguise, lies, and alibis… Bonkers type stuff. I could be Jason Bourne or even Tom Ripley for all you know (Matt Damon man-crush alert!). This year is the year I vowed to kick-start a life full of adventures, big or small. Maybe I'm just keeping up with that promise. Maaaaybe…

So which is it? I'll be honest, I'm not really gonna tell you. If it's the super boring option, well, that does me no good. No point in letting you all realize just how droll and mundane I really am. I'd like to keep that a secret (shh!). Yes, I actually think there's the possibility that people find me interesting and intriguing. DELUSIONAL!

What if it's the other option, hmm? What if I am having the best time of my life right now? Totally possible. The recent past hasn't really been very nice, more like a bunch of blah with Multiple Sclerosis being the cherry on top. If anything, now would be a good time to be living it up, taking chances, and going for the gold. If it is the crazy exciting stuff though, I probably can't tell you about it. Don't want to get arrested and sent to jail for being extra awesome.

My blog is a reflection of my life. I keep quiet and hush-hush during the fun moments and get super talky when things aren't going so great. I tend to keep the good stuff on a need-to-know type level because, to me, it's too personal to share. All the bad stuff, even medical junk that should be personal, I have an easier time sharing. It's bad stuff, garbage, so it's easier for me to throw it out for everyone to read. The stuff that makes me smile, that stuff is mine. I put it in a nice little box and keep it safe, away from everyone else. Sometimes I'll open the box up and let some of you look inside. Occasionally I'll even share if you're someone special.

Just know that if the blog here is empty for a while, it's not that bad. I haven't died or fallen into some deep depression. Odds are, it's the complete opposite. I could be living a boring life or an adventurous one, but it's a life I'm enjoying too much to stop and write about. Of course when I'm ready to reflect on everything, I'll write with humor, a bizarre outlook, and funny pictures to illustrate. You'll be totally entertained!