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.

Monday is my Cleveland Clinic appointment with the surgeon. Oh man. I'd say send good thoughts my way...but what are good thoughts? Hopes for or against the surgery? Wishes that the medication works...or doesn't? O me! O Life!

So I was going over a rereading some of the older entries here and Dana had mentioned her date of diagnosis....and it left me wondering...am I the only person who doesn't remember the day they were diagnosed? I remember the place, the conversation all that jazz, but the date/time...no flippin idea. In fact, I'm pretty sure I tell people it was Oct 2006 but in fact may have been Sept 2006. I really have no clue. Not so ironically, the same thing goes for the Colitis diagnosis...I was definitely telling other doctors I was diagnosed in May 2009 when I'm pretty sure it was actually June 2009. I suppose being a month off isn't that big of a deal, but those specific days were not burned into my brain like many other people.

Is this a testament to how awful my memory really is? Probably not.
Is this somehow showing that I really don't care?  Not so much.
Is it some indirect form of denial? Highly doubtful

So what is it? Why don't I remember the day? Why don't I care that I don't remember the day? Honestly, I can't even theorize on this one. I got nothing. Perhaps if I would have created a catchy jingle like the one about Columbus sailing the ocean blue (1492), I could remember.

But ask me what day my dog was born? Well, dur, March 18th, 2005.

Whelp..tonight was my first shot on Methotrexate. After a pharmacy debacle and a half (get your shit together Walgreens), I did it.

I hesitated at first, and told my self to stop being a D-bag and just get it over with..so I did...

So next week I'll join the monday night shot club with Dana and Damon...help me remember to take this crap people...otherwise I'll forget..on purpose.

Now lets just sit back and relax and wait for those super sweet side effects.

edit: I guess I forgot to tell you all..whoops. Im the worst blogger EVAR!. Anyway..I was instructed my by rhuematologst to stop taking the 6-mp for my colitis and to try the methotrexate instead. Methotrexate is typically used in RA, or some form of cancers, but were going a bit off the FDA approved path here and are going to try it for my colitis. It can be used to treat crohns, so the theory is that if it works for this, I wont have to have any mayja surgeries.

edit #2: I am using 40/mg once a week. So thats 1.6 cc. I did get 4 viles however I think there might have been a mistake so I'm looking into that today. The cost for the 4 - 50/mg vials was around $25. Which is not covered by my insurance so I guess its good that its pretty cheap. The syringes were about $15 for 12. Then there is the cost of the alcohol swabs which was like $2. So Month to month I figure I'm looking at about $40. Which is not fun, and more expensive than my other prescriptions, but still do able for now.

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....

Ok so I've been having this on going problem for a while now and I'm looking to you, the readers, to see what you guys do and if I'm over reacting. Ever since my colitis diagnosis I've been having this struggle with my parents (sorry Mom) about who I want to know, and who I don't want to know. For some reason unknown to me, they feel that by not telling people, that they are lying and hiding something. I think that by not telling people, I get to keep some dignity at family functions. But we have yet to see eye to eye on this one and it has been a constant fucking struggle. I have what we like to call a chatty family where I swear there is a phone tree and once something happens the whole world knows and I dont really want my butt hole to be apart of the weekly bulletins.

So do you tell everyone you know? When you have a problem do you inform the family? Do you think its YOUR choice who knows about your health problems and who doesn't? Is it lying if you choose not to tell everyone you know about your medical issues? At what point do you tell people?

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.  

Well.

I had my first meeting with my new therapist last Friday. Shes fucking awesome. Yes. So awesome she deserved the word "fuck" in her introductory sentence. Seriously. I have this fear now that for some reason it won't work out but again, I'm working on the positivity thing. Shes great honestly. She totally got it. She totally got me. She totally gets chronic illness.

I will now totally recommend that if you decide you want/need therapy (and I truthfully think everyone needs therapy for one thing or another) that you seek out someone with experience or a specialty in chronic illness. Wow what a difference it makes.

I'm really excited to go again, and start working through some of these issues. Shes so real. She swears...a lot. And for someone like me, that like makes me feel comfortable in a strange way. It shows me shes real. She actually talked to me, instead of just listening. She acknowledged how shitty things are in my life as opposed to just letting me vent. She even blantatly asked me how I haven't gone crazy, or gone off the deep end at this point. I really think she and I will get a long.

I see her again next week and its times like this that I wish that the session was longer than an hour and that I could afford to see her like 8 times a week. I'm ready to get my life back. I'm ready to learn how to deal with this and I'm ready to start over. I think starting this now is a great time because hopefully I can get my shit together before the new year and have 2010 start out great and I can make a whole bunch of resolutions (that I won't keep) but will feel positive about.

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.

Yea Dana is coming to visit today.  It's a big day! All I have to do is get through the work day and pick her up from the airport and then its like 5 days of fun! Thank goodness! I still have to work a little here and there but for the most part, I'm so excited to finally meet her. Oh wait, you didn't know? Dana and I have never met!

Like I said...its a big day!