I'm now also blogging for a new site dedicated to people who are going through or have gone through these surgeries I'm about to endure. If you have any interest at all in reading way too much about poop and butts....check it out here.

http://www.jpouch.net/

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....

December 1st marked one year of my new life with MS. I remember waking up on the cold December morning and driving the two minutes it took me to get to the hospital, so that I could pick up the MRI report from my appointment a week earlier. At first I confusedly read through the findings, and then got to the bottom of the pages where I saw the words "most likely a demyelinating disease/MS." Well there it was, in a nutshell. The confirmation I didn't want. While I wasn't completely shocked, I was devastated. It's a year later now, and I feel like I'm learning to live with this. I am still pissed some days, still sad some days, and still surprised some days. My favorites days however, are the ones where I am living my life without MS streaming in the background. It's been a whirlwind of a year, and I have to say I'm glad to have this first one down. It's been tough and I've surprised myself, and I think I know myself better now than ever. I feel more confident in myself than I ever thought I could one year ago. I am so grateful for the people I've met on this journey so far, for the people I know aren't going anywhere, and for the little moments that make this life amazing. It's been one hell of a ride, and it's so far from over.  

During my last visit with the specialist, I wasn't surprised to learn that I'm having some issues with high blood pressure. I can feel my own heart pounding out of my chest quite often these days, but it isn't so disturbing as when I am sitting still, or trying to get to sleep. My migraines have been tenfold lately, and unfortunately a new medication (Maxalt) that the doc gave me to try didn't work out so well. I have an RX for Topomax which I need to have filled, and am hoping will help get the migraines under control. Anything less than one migraine a week would be amazing to me. I woke up this morning, very early for work, and promptly fell into my closet. Not realizing the issue I continued walking out into the living room, doing the drunk dance. While I had thought I'd experienced vertigo before, what had been more visual for me, rather than physical, I'd say this was either the real deal, or something quite different. I couldn't move without falling over, so that was awesome. Needless to say, I was scared shitless. I had nightmares of failing my finals and not making it to work again for god knows how long. I went back to bed and, and with some difficulty getting to sleep, woke up three hours later, vertigo free. I am a bit concerned that the high blood pressure, worsening migraines, and the vertigo could be intertwined, but who the hell knows? I see my specialist again in just a month, so hopefully we can figure out what's happening. I'm so, so thankful that whatever happened this morning decided to go away however.

On a happy note, I had an amazing Thanksgiving at home. My boyfriend and I decided to finally have our own Thanksgiving, which would spare us from having to make anywhere from 2-4 stops in order to fulfill all our family obligations. We left the door open for anyone who wanted to stop by, ate lots, drank enough, and had so much fun. I got our Christmas tree the very next day, in an attempt to keep my holiday spirits up. This time last year we were knee deep in stress, so this year we are grateful for the peace of mind we do have. Our dog is still alive and kicking, I can actually feel my legs, we have a new home that we've grown to love,and the bills are payed, even if just barely. Life is alright. 

Have any of you heard of the brilliant theory that most people with MS have a type A personality? I've heard this one a few times, and it doesn't really sit so well with me. So in the discussion forum for my psych class, the prof asked, "Are you more type A-ish or type B-ish? How do you know? What diseases or health outcomes have you had, and how does your health history fit with your type A/B category. I thought this was an interesting question, since I've actually taken the time to ponder my health in regards to what my possible "personality type" might be.

From what I gather, type A personalities are horribly impatient, quick to get angry, never relax, workaholics, super competitive, and pretty much mega-douches. While I would say that that I in no way embody the type A personality to a "t" there are definitely some aspects of type A that I'm sure I would fit into...especially when hormonal. There doesn't seem to be quite as much info out there about the happy-go-lucky type B's, at least in what I have come across. You'd think type B's lacked any definable personality whatsoever, just lackadaisical beings apparently. So I don't think the whole type A/B theory is total bullshit, because I definitely know some people who in my humble opinion, fit nicely into either/or category. The vast majority of people I know however, including myself, aren't so black and white. If I really had to come up with an answer, I would say I'm a type B personality with a mind that is frequently spinning with type A fantasies. That sums it up pretty well I think. 

So here I am, a type B living in type A la-la land. Physiologically this might make me even more effed up than a pure type A personality. The stress is still there, it just isn't always completely obvious. It's been a good two months since I lashed out on anyone. Anyway, thanks to the (generally) internalized stress, my brain is releasing shit tons of stress hormones which...supress my immune system? Well with a disease like MS, it would seem like that would be a good thing right? I don't know. Now I'm just more confused than ever. I suppose the one aspect of a type A personality in terms of MS that makes some sense is the physiological impact of stress on your body. If you're a type A, you ooze stress, which is a major energy drain. If you're body is working super hard to maintain itself in spite of stress, than it's taking away from the energy you require to try and battle this MonSter (that was for you Jackie) and it's symptoms. Yeah, that makes sense. However, I'm sure there are plenty of type fricking B's out there who can attest to the fact that personality type in no way determines whether or not you will get MS. Can personality type make you feel even more shitty than you already do, I can agree with this to a certain degree. I think we're going to have what we're going to have regardless, but I do believe that stress impacts our bodies in some pretty big ways. 

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.