I thought about writing the day before my appointment about my nervousness/anticipation. I didn't.
I thought about writing the day of. I didn't.
I thought about writing the day after about my disappointment and fear and depression. I didn't.

I am writing today. Still not quite sure what I want to say, but these are the moments I dont want to forget, and just maybe, these are the moments that could possibly help someone else.

I'm calling the surgeon today to schedule my first of 3 surgeries. More than likely I'll be going through a 3 stage process of a total colectomy , which will take a total of 9 months. They will be removing my entire large intestine, and creating a new one out of my small intestine. I'll have what I'm referring to as my colosto-baby for the entirety of those 9 months. A.K.A.....a fucking colostomy bag.

Remember when I asked if it could get worse?

I knew this was a very large possibility but confirmation of it monday was just a lot to take. I cried. A lot. I threw a pity party all day though my only party guest was myself and I didn't even get cake.

My mind is swirling a bit. There is a whole lot going on up there right now. Weighing odds, and percentages vs. living life how I do now. The idea of "getting my life back" even though I'm not totally sure that it's completely lost. But the idea of having one less ailment to fight, about 10 less pills to take, 1 less injection, and regaining a sense of who I am....that does seem pretty appealing.

I'm still not sure how I'll go about telling people about this, but I've learned through my life that when you're ready to tell people it means you're ready to accept it. I gave this stupid colitis the best fight that I could, and tried to hide it as best as I could. Clearly, I lost...and I'll be spending the next flippin year of my life losing, at least in my book. But hopefully....just hopefully 2011 might be my effing year. I said that about 2010, but even though its the first week of feb...it appears as though that will not be the case. I spent a lot of time being embarrassed...instead of realizing this is a real disease and its really messed me up.

Am I optimistic?...nope. Am I pessimistic?...nope. I don't really know where I am right now. I'm stuck in this limbo, of "this is what I have to do even though I would rather remove my own eyeballs with a plastic baby spoon".

I will be crawling under a rock for a while. I will be hiding out.

p.s. Good news for you guys...now that its all official...I'll stop writing about it here...there's a new site that I'm hoping to blog for.

So heres the thing about my depression. Let me know if its the same for you. I'm pretty level...numb if you will for the most part...but when something makes me sad...holy hell I'm sad. Really fucking sad. Here's the other thing...I don't want to die in my depression. I'm not so depressed that I want to end it all, I feel like I'm depressed in a different way. I just want to be happy. I keep thinking about all of the things that could/would make me happy and they all just seem so damn far away and impossible. I want to live, I just want to be happy while I'm living.

Every time I think I'm doing ok, its like something comes along and smacks me in the face. I've basically given up on my GI. I went to my rheumatologist to try to get a new game plan. He gave me one last ditch effort option before surgery. Methotrexate. An injection. Fuck.


Now I know I'm not going to get any sympathy from this crowd on injections. I've done them. I did betaseron for over a year and it sucked ass so I stopped.I have been considering Copaxone lately, but jesus, I dont want to have two injectable medications. I feel like I was mentally prepared to handle Copaxone...but not this other one. I just keep remembering all the anxiety I had before plunging the needle into one of my appendages. I could sit there easily for an hour before even moving. Just staring at the needle wishing I had the balls to just get it over with. This is something I have NO desire to revisit. Also this medication is NOT approved for colitis. My GI wouldn't even try it...

There is a giant part of me that hopes these meds fail. That way I can just get my diseased organs removed and forget about all of this. Forget my embarrassment, my pain, my medications, and my permanent attachment to bathrooms. But that's totally screwed up right? Its screwed up that I'm more willing to go under 2-3 surgeries than spend a few months on an injectable medication that might help.

I hate being a cliche. I hate being a statistic. I hate being the epitome of depression right now.

Although this does mean...I get to join the Monday night shot club with Dana and Damon. Too bad my name doesn't begin with a "D".

I keep retiring from blogging and then coming back. The difference is I am not getting million dollar contracts for returning. The truth is there has been a lot going on but nothing that has really inspired me to write. Most of my life lately has been consumed with this whole colitis thing, and this blog is not the place to talk about that...so I haven't. I'm still in the midst of debating these surgeries, and how I feel about my doctor and all that jazz. I still am rockin' along in the MS department. No major snafoos or problems and I have another meeting with my new neuro specialist in late Jan (I think). When I see him then, I think I may talk to him about starting copaxone...which I REALLY don't want to do.  But Dana and Damon have all these shot parties without me and I'm starting to feel left out....

But seriously, I'm worried that the reason I hated Betaseron so much was that it just didn't mesh well with me and that I perhaps gave up a bit too fast. I think I may give copaxone a try..but there are a lot of factors...primarily my insurance. I have a pretty high deductible and my insurance doesn't cover injectibles (awesome, I know. and totally fair as well). There is the hassle of applying for patient assistance programs...the daily shot thing...and how it will play into the other medications that I'm already on that I sorta have to take.

But if I have these surgeries, I will have to be off of this medication before the surgery takes place...and then I'll never have to take them again. Pro.  I will however have to have 1-3 surgeries to get to that point, and then I guess I'll be able to take copaxone (Con/Pro).

Ah well...perhaps I should just stop talking about it...as clearly I'm just boosting my own ego....

I've been sad lately. So sad that I can't even think of a $5 word to replace "sad". I'm talking sad. Like..sad sad. So sad, that I just keep thinking about how sad I am. My brain is running something like this...

sad.
sad.
sad.
sad.
sad.

You get the point. I'm sad, ok.

So that whole positivity thing I was feeling out...clearly...not working so much. I've had 2 therapy sessions so far, and while I think shes rad and its going well...I'm skeptical. I'll keep you posted on it. But I've noticed MAYJA mood changes and attitude changes in myself lately and it all culminated last week when I spent 2 days being a total basket case and balling my eyes out all day. Perhaps I'm a bit depressed. I was really doing well with all of this for a long time and I'm not sure when it all changed but it literally went from Ok I'm fine, to holy shit I feel like I'm the saddest person alive.

So heres where we talk about anti-depressants. A common thread among MSers, and others that suffer from chronic illnesses. I've never taken them before, I've never even really considered it. I like to try to control my medications, and take as few as possible. But I went to my latest GI appoint for my super awesome colitis, and really it wasn't great news. I have yet to have an appointment in that office without crying. They must think I'm a total flake. Being in there is the most hopeless feeling place I've ever been (this is a lie). Anyway, the 6MP is not so much working, so now I have to figure out where to go from here with in relation to my MS and not flaring that with other medications...blah blah blah I have to go to a special appointment at the Cleveland Clinic and drive a few hours to get there. So while I'm there, I mention to them about my depression and basically they mention the Anti-Ds and asked if I would take them. I said yes.

After those 2 days I need something because I can't function in life like that. I'm on the generic of Zoloft, whatever that is called. I don't know if Anti-depressants are supposed to work right away or if they take time to adjust things but I'm paying seriously close attention to myself these days. Probably too close. Every time I feel even a smidge above sad, I'm like "oh they must be working" even though I've only been taking them since Friday. I've noticed that I think they are already messing with my sleep...which is already screwed up, but I've learned to deal with that.

I don't know. There is part of me that's really bummed because I thought I was handling all of this, the new diagnosis, the hospitals, the medications all so well. So strong. So positive. Hu-RAH. There is a teeny tiny part of me that feels like I've failed a bit, or that I'm super typical because I have now followed the route that so many others have. Bad news = depressed = anti-depressants = lame-o. I had a friend tell me to just take them until we get this whole medication thing figured out...which I think is a good plan. I'm trying really hard not to sink into myself, but its hard. All I want to do is sit on my couch under a blanket and watch DVRed episodes of Gossip Girl and Greys Anatomy (don't judge me). But I know that wont help. So I keep trying to go out, stay occupied even though I don't want to go anywhere or see anyone. I really don't want to see people. Ugh I'm so tired of seeing people. I'm so tired of talking about my health, and feel embarrassed for how I look and how different it is. I'm tired of the pity looks, and wondering what people say when they get home. Perhaps I'm vain for thinking people talk about me when they get home, but if I saw me, I for sure would be talking about me. I've been in hiding now for a while, and this new depression thing just makes me want to hide more.

Yesterday I also got my first ever handicapped placard. Which depressed me. I'm officially 25 (I had a birthday, which also depressed me), and I have handicapped parking. Its a perk for sure, for long walks, but damn it, I shouldn't need it. Things are sucky. I really hope that stuff turns around here soon.  

Today I got asked again if I was disabled....again. How the crap do I answer that. So I asked if that meant legally, like on social security. The woman said not necessarily, but it had to be documented by a doctor....So I said yes. Yes, I am disabled. I figured it might not be every damn day, but there are definitely some days that I am disabled and damn it my doctor better back me up on that shit.

Lately, I've been having a lot of mental/emotional ups and downs. The last 2 days have been great. I feel better. I have more energy. I still look like shit, but I'm really trying to let it bother me less. I've also decided to start therapy...again, starting tonight. I've switched over and I'd say I'm like 80% Gluten Free now and I don't know if that has made a difference or if my medications are really starting to work now or maybe a combo of both...but the colitis department is slowly getting better. I actually slept through the night last night. OH MAN! I've also put myself on a diet until Thanksgiving. I love to eat and I refuse to deny myself Thanksgiving, but until then its Boost shakes and healthy dinners. Honestly, I love Boost shakes, they taste awesome, they are Gluten Free, and I really do think they give me more energy. They should give them to me for free because I talk so awesomely about them.

Anyway. I was really in one helluva rut there for a while and I'm really trying to make some positive changes. I didn't really feel depressed but I noticed I was having more and more breakdowns, so I just decided to do whatever I can to pull myself out. That means therapy, a haircut, Boost shakes and working out again. Working out is the tough one. I still can't really do a whole lot, can't work hard, can't work very long. But damn it, I'm tired of feeling so awful ALL the time. Its time to be proactive.

I'm tired of waiting around until the doctor says that I can get off these medications. I keep thinking once I'm off then, I'll feel better, look better and so on but the reality is it wouldn't kill me to try to do all of that now. I may have to put in more effort to do it, but I can't let myself get lost in a depression. I dont have the time, money, or energy to pull myself out of that. So heres to taking life by the proverbial balls.

Well big shocker. Since last Wednesday I have been camping out here again at the hospital...good news is that its not MS related, nor heart problems. Wahoo. However before we all start rejoicing with the peasants, lets take a step back and talk about how shitty it is that I'm here because its due to the colitis. Which as we all know, is seriously one of my favorite things to talk about. Remind me again, how much I hate my life.

So I'm here. Have been here. Hate being here, however am becoming a regular here. Nurses know me, people go out of their way to visit me. We're regular old friends around here.  Its like cheers except minus the liquor, fun, and Kirstie Alley.

So I'm gonna talk about the colitis for a bit, just because I think the education aspect of it is important. I do apologize that because of my medical disasters this blog has branched out a bit from MS, but hey since my MS is in remission right now, its clearly more fun to talk about as my disease ridden asshole.