I have a lot of new ideas of entries for your reading pleasure, however am not really in a research kind of mood. So instead I'm going to talk about my super sweet sign language class that I started last night. I have wanted to learn sign language for a really long time and there was a community ed class that became available so I jumped all over it. While super geeked about this class and really excited to learn something new (I know, I like to learn, how laaame .) as the class grew closer I became increasingly more nervous that I wouldn't be able to actually learn and retain the information in the class.

As that class began and the teacher started talking I was listening like I had never listened before. Like this was my last chance to ever learn something again in my life. I started really thinking about the what-ifs. What if I love this, and then one day I can't move my fingers enough to sign? What if I can't retain any of this information and my goal of learning this new and exciting thing is totally lost? What a drag.

Well the class moved a long and turns out I really liked it. I wanted to know more instantly, and while my brain wasn't exactly the sponge it once was I learned a lot. I practiced when I left and even this morning on the way to work finger spelling random words. I can't remember the entire alphabet but I remember almost everything we learned last night. Its going to be tough, and I'm going to have to actually study which is something I NEVER did in high school or college. I gotta tell you it was WAY easy just having everything be easy and never studying, but for the first time for me learning will be hard. It will totally rewarding, as lame as that sounds, but its going to be damn hard.

Its sad that at 24 I already feel like I'm not capable of learning new things. If can't remember things I already know, how the crap am I supposed to learn something new? I'm not really sure, especially with the vast hole that my brain seems to be at times. I don't know. I'm thinking about taking small videos of myself after each class doing the signs that I learned so I can remember, because taking notes doesn't really help with sign language. I think that would be beneficial and I guess that's what its all about, learning to use things in new ways. It seems like more so than ever I'm under the "if you don't use it you lose it" mentality. Which is why I try to write by hand and type a lot everyday because I know that skills have been lost since my teenage years. Hopefully I can learn this language, remember it, and be able to put it to good use.

So as I embark on this new journey, new language, and new community, I'm really excited, but also terrified. We'll see how it goes!

So lets talk about how I feel like an idiot ALL THE FLIPPIN' TIME. Dana recently talked about her cog fog problems, which I can totally relate to. There are definitely times where I just cannot process a real thought, and other times where I really have to work to understand what someone is saying. I give people this "deer in the headlights" face often, but it really just means that I'm trying like crazy to follow the conversation.

I used to pride myself on being a intelligent, educated, and thoughtful person with an extensive vocabulary. However over the last 2 years or so I'm pretty sure I'm getting dumber. I have even in fact, honestly and sincerely asked a few people that I know if they think I'm getting dumber.  And it appears to be getting worse. I cannot remember things to save my life, and I have all these people I know who say things like "oh I know, I can't remember stuff either" or "i forget all the time too!". Wrong. This is different. I hate to pull the "I'm dumber than you" card but I'm gonna. You can take some ginko and remember stuff...I can't make my myelin grow back and repair the holes in my brain. I think I trump you. I win. It's different.

This morning I woke up, and remembered I had a meeting for work, one that required me to look nice and put make up on, you know to make people think I really do know what I'm talking about. Its all doom and gloom outside so I was bummed that I'd have to walk across town in the rain and my nice pants to go to this meeting with people I've never met. The meeting is scheduled for and hour and a half from now, so I started to prep myself for it. I reread the email from the coordinator about the meeting....Blah blah blah....location....time....date....  Ok got it. Thursday at 3.

Well on my planet today is Wednesday, not Thursday. I had spend all last night and this morning thinking this meeting was today. I read the very same email last night before I left work and went, ok yup, 3 on Thursday. Now this may be a fairly innocent error, could happen to anyone right? But it doesn't. It doesn't happen to everyone weekly....daily.

My boss even recently made a joke about my forgetfulness, which is when it sorta really truly hit home. People are noticing, and not only am I forgetful but its making me, a once intelligent, educated, well versed person, now look a total complete ditz. I would say its humbling, but it was humbling the first year of my disease. Cognitive issues definitely took me off my "I'm smart" high horse. Not only have I proven to myself and the world, that I am in fact not smart, but am also getting dumber.

I don't have many people in my life who let me feel sorry for myself in these instances, which is helpful. But until meeting Dana, no one understood it. No one gets whats its like to know that you're not dumb, but for everyone around you to think of you as the ditz. No one gets what its like to actually have to concentrate on normal conversations just to understand them, or what its like to write EVERYTHING down, but then still forget about it.

I write EVERYTHING down for work, otherwise I will truly walk around like an idiot. If I forget my notebook, I'm worthless. But even sometimes when I write it down, I forget. I do everything I can to stay on top of the black hole that is my brain, but it seems like no matter what I do to fight it, its getting worse.

I don't ever feel like my head is clear and focused. It feels like a case of ADD and Alzheimer's combined together. I can't focus, I can't remember, sometimes it even feels like I can't learn anything either. Having cognitive issues is one of the worst that I've ever experienced in my life. Its enough to put even the cockiest person in their place. It almost makes you feel like you don't know who you are anymore. After all, if you can't control what goes on in your head, the way you think, talk, and interact with people....who are you? You sure as hell don't feel like yourself.

So I'm getting all teary and stupid over this, but what happens when I don't remember what it was like to be me. To be a smart intelligent person who could be insightful and carry a conversation? What happens when all I am is the flaky space cadet who can't remember to put on pants every morning?

I guess everyday will be a no pants party.

So today was my first follow up neurologist appointment since starting Avonex. I went in with a few questions written down, since I seem to space out immediately upon entering the office. It seems like everyone is zombied out, from the lady at the front desk, to the nurse, the other patients waiting in akward silence. I half read some stuff on stem cell therapy in Neurology Now, but couldn't really focus much. I just brought my copy home.

 Anyhow there was the typical exam with pins and pokes and walking and the like. My doc seems to think that I'm doing well, and I'm pretty sure I am too. I asked about the fact that there hasn't been a day since November that I haven't had any sort of symptom, be it buzzing or numbness or what have you. I asked if this was normal, as in is this what "remission" is like for me. It's different for everyone, and I know this. I am just wondering if remission for me, or for anyone, means feeling absolutely NO symptoms whatsoever for any length of time. He couldn't really answer that, and I suppose this is okay. I also asked when I would have my next MRI, and he said either if I have a worsening of symptoms, maybe in a year, or perhaps if the specialist wants one sooner.

Even though I knew going into the next question what the answer would be, I sort of wanted to know what his take would be. So, I asked if when they looked at the results of the next MRI, if they would be able to tell me if the Avonex was really making any sort of a difference. At first he said it depends on what week you ask him that question, since opinions are always changing. He then went into the schpeel about how short a time the drugs have been on the market, how we really don't know if they're helping this generation of MS patients, but there is a chance that perhaps less will be disabled, as in wheelchair bound and the like. It was the answer I expected, and I appreciated it. I know it isn't his job to feed me a line of crap, and he didn't. I was pleased.

Another one of my questions was in regards to the cognitive issues I have been dealing with. His response to this was to ask me if I was depressed, which I do understand. I realize that depression can play a huge factor in cognitive issues, but I don't necessarily think this is my issue. Understandably so, I'm not the happiest I've ever been in my life, but I'm certainly nowhere near the saddest I've ever been. I feel pretty even keel right now, especially considering the circumstances. He suggested I sit on the issue until the next appointment, and then possibly think about starting anti-depressants. While I appreciate the thought, anti-depressants are not on my list of to-do's. I have had pretty negative experiences with them in the past. I'm not writing anything off completely, but it would take a heck of a lot of depression to put me back on medication. I think the cognitive issues will be something that will probably be better addressed with the specialist, which is a-ok with me.

I didn't really come away from the appointment with anything I didn't know before, and this is just as well, and what I expected. I understand that we can't expect doctors to have all of the answers, especially when it comes to a disease like MS. In a sick and twisted way, I sort of enjoy being somewhat on par with my regular neurologist in terms of knowing what's going on with my disease. On another note, I was hoping he would redeem himself today, after my unimpressive prior visits. I am happy to say that he was the least zombie like out of everyone in the office today. I have found that just being more assertive and demanding with him seems to work a little better. I also think he appreciates the fact that I'm doing my research, and not simply relying on him for all my information.

I have been dealing with what I always called "brain fog" for quite some time. I suppose the farthest back I can remember consciously observing it, would be like five years ago or so. This irritating inability to think clearly would take over. It never really lasted all that long, and it was by no means debilitating, just irritating.

When I was diagnosed, I learned a lot about the physical symptoms and wasn't so freaked out about the random sensory issues I was having. I sort of thought, if this is the worst of it, I can totally deal with it. Granted I knew MS was something that would progress over time, but there is nothing wrong with a little wishful thinking. Anyhow, in my mad rush to learn as much as I could, I never really read much about the cognitive issues that often times are a part of MS. In everything that I did read, it seemed like there would just be passing mentions of the cognitive stuff. I didn't even think about the link between the "brain fog" I had been experiencing for so long, and the MS. 

So in the last few months, the "brain fog" has taken on a life of it's own. I am not really sure if this is part of the recent progression or advent of my MS, or if maybe the stress/anxiety of a diagnosis has just made me frazzled. I honestly believe that the brain issues have become worse though, and along with simply feeling like I sometimes can't "think clearly" I have started this short term memory business that is downright creepy at times. Although it seems like little stuff, and most people who I describe it to say, "oh I do that all the time" I know that for me, it's a little more chronic. I actually got into a tiff with a customer who I was sure hadn't given me money for his drinks, when the money was sitting by the register. He literally took off, and I was fuming pissed because this jackass hadn't payed for his drinks. The whole time he was like, "I gave you a ten." I told him, "you can't mess with me like this, I know you didn't give me money." I felt like the biggest ass when I turned around after he had left in a huff, and there was the ten. 

Yesterday I was cleaning like mad, and looked at the garbage in the bathroom, making a conscious decision NOT to empty it. This is the last I remember anything about the garbage. So about fifteen minutes later I walk back into the bathroom, and the garbage can is empty. What the hell?! I literally got so pissed, because I had ZERO recollection of doing anything with the flipping garbage. I literally became angry with myself.

I was out for drinks with some friends a while back, and I'm sitting there while everyone else is in conversation, just totally oblivious to what they're even talking about. I felt like I was putting all my energy into trying to keeping up with what they were saying, that I wasn't adding anything to the conversation. When the brain starts feeling like this, I honestly do this little thing where I start to sort of "blank stare" at something, only I'm not really able to focus on one thing, I'm sort of just looking past everything. Most of the time when I notice myself doing this, I snap myself out of it, but there's nothing more annoying than having to constantly remind myself to focus. I full on ran a red light last month when I was in one of my "spaced out" modes. 

The thing that is probably most frustrating about the cognitive issues, for me, is the fact that I just don't want to talk to anyone when I'm feeling them. Trying to explain to someone why you can't make even semi-intelligent conversation is like pulling teeth. Most people do not get it, and if you try and explain it to someone who isn’t part of the MS club, they either think it's a load of shit, or "oh my gosh I do that all the time too." I suppose there are some major plusses to having a disability that is often times completely "invisible" to others, but it also leads to some serious feelings of misunderstanding. When I first began having the issues to this extent, I honestly felt like I was going crazy. Thank god for the wonders of the internet which allowed me to realize this shit was apparently normal. 

I suppose the positive aspect of my cognitive issues are that I don't experience them 24/7. The longest they have lasted at any one time, have been maybe two or three days straight. I actually went for a few weeks recently, without feeling much of anything in the way of cog fog or short term memory. It was great. Today, eh, I've got that glazed over feeling like there's just this veil of stupidity surrounding me. I suppose in a way this aspect of the disease scares me a little more than even the physically debilitating features. If my legs are all funked up, I can still work, depending on what job I am doing. However, if I can't process my thoughts fast enough or remember something I did minutes before, I may have a bit of a problem. 

When I saw my neurologist a few months ago, he told me in so many words that my brain looks more like that of a 65 year old, and that this was "abnormal". So maybe this is true, but I guess I would have rather not heard it. Now I'm working on not comparing my brain to every old fart I meet. I want my brain to be senior citizen like, when I'm actually a flipping senior citizen, not now.