Just dance, gonna be okay...

Yea, I did it. I quoted Lady Gaga.

Anyway, the past couple of weeks have been rough to say the least. I felt wonderful after my last infusion for a few days and was quite certain it was the Tysabri working its magic. I still think it could have been the last infusion because quite honestly the 40MG dosage of Prednisone hasn't been working the way it did before the last time I tried to taper. So either my disease is getting worse, which I doubt, or I was in fact feeling some benefits from the infusion.

Basically, I've been waking up day to day not knowing how the heck I'm going to feel. I usually take it easy in the morning hours while I get a grasp on how my disease is going to behave today. Even if I feel crappy in the morning, for some reason I am always given the 5pm-12am window of relief. And I gladly take advantage.

The positives of the past two weeks are that I have gotten back to exercising. Understandably I am not quite back to my usual routine of running miles and miles outside to nowhere in particular, but rather I've been trying to walk as much as possible on the treadmill. The problem is that I have absolutely ZERO energy and I am convinced that as long as I take Ambien, I will never truly be awake. I try to only take it when I absolutely need it but this is most of the time. When I wake up in the morning I have that Ambien fog in which I don't want to sleep all day but actually making it out of bed is very difficult.

As much as I hate Prednisone, I'd rather have the euphoria usually associated with this medication than the constant fatigue I experience when I'm trying to taper. And I'll be honest, the second I feel good, I give myself a few days and then I try to decrease my dosage by 5MG because quite frankly, I don't want to be on it for longer than I have to.

At the same time, succumbing to running on the treadmill infuriates me as a runner. It's certainly not the most ideal situation and I don't get the same effects. But I need to resign to the fact that it's something and I'll take that over nothing. There's just something about running in one place and being stuck inside that stifles my soul and only reminds me that I am far too sick still to be running outside with the rest of them.

And so that is my conundrum at this juncture in my life. I am far from healthy, but far from being sick. I am stuck in this middle ground. If you asked me a year ago if my situation right now would make me happy, I would have told you yes. I would have thought that being able to walk and run and be a part of my friends lives again would be the greatest thing in the world. But eventually, like anything in life, we all want more. Suddenly it's no longer sufficient enough to merely be passing through life, living and breathing, because now I want to participate in life the way I could before. And right now, I can't. I need more consistency in the improvement of my symptoms.

I want to be the better version of myself that has been lurking under the cloud of Crohn's for so long. I miss the randomness with my friends, not planning anything out, just flying by the seat of our pants. These days, I need to have much mapped out for me to feel comfortable doing anything. And if I'm not comfortable, my friends aren't. And I never want to compromise anyone else's good time at the sake of my own problems. I know I just need to appreciate what I can do right now but it's hard because what I can be is only one small percentage of what I am.

And yet every day when I walk on the treadmill I can't help but be bitter and feel stifled at what this disease has done to me. There I am, in my sisters basement, only in control of how fast or sharp of an incline I walk on. I don't control what is around me; a world moving on while I am merely replacing one foot step for another in the same exact spot I placed it in my previous stride. I am inside and everyone else is working, making plans, living life, and figuring shit out in the process...

At least when I ran outside I felt like I was going somewhere, even if that somewhere meant I would return home in an hour. But there was always the chance that I would be inspired to run off my usual path and take a longer, sharper route home. I want that option even if I don't utilize it.

I want to make mistakes. I want to fall down. I want to have the option of taking a more difficult path in my journey. But there's not much falling down you can do when something totally out of your control dictates how you are going to feel every day. I can only control how I respond. And right now I am choosing to get on that treadmill every damn day as long as God gives me the energy to do so.

Tysabri Infusion #2!

On Wednesday I received my second infusion of Tysabri but I was holding off on writing about it because I wanted to see how I felt. I am always hesitant to write when I am feeling well because I don't wanna jinx anything. I know it's completely irrational but seeing as how Tysabri is pretty much my last hope at getting back some normalcy, you can understand my hesitance.

The infusion itself went smoothly and I was in and out in about three hours. Unlike when I was on Remicade, I'm not subject to a Benadryl coma beforehand so I find I am not as bogged down afterwards. It's a much easier infusion for me to handle and it's faster, so I'm happy.

Despite treating my body like absolute garbage the past week, I am feeling great. My doctor and I discussed which symptoms were still acceptable to have and I feel comfortable trying to taper off steroids again. This will be the real test of Tysabri. If I can get below 20 MG of Prednisone and still feel like I do right now, then I will be comfortable in saying that Tysabri is providing me the relief I am experiencing, and not the evil stuff.

In short, the verdict so far is that I do think Tysabri is having an affect on my Crohn's. I have definitely noticed a sharp decrease in my symptoms in the past couple of days. And like I said before, I haven't been exactly getting enough rest or eating the right things so I can only imagine what a couple days of good shut eye and proper nourishment will do.

I also had my eight year Crohn's anniversary on Friday. Typically I don't even stop to think about that day although it's always in the back of my mind, but considering how I spent all of last year, I couldn't help but reflect on the roller coaster ride that has been my struggle with this illness. EIGHT freaking years. I can't believe it sometimes. I really wonder where all the time has gone. Hopefully the way I feel right now is a sign of things to come and next year I'll be too busy being happy and healthy and January 15th will just be another day on the calender.

THIS is kinda scary...

http://www.attorneyatlaw.com/2010/01/four-more-brain-infections-found-in-tysabri-users-biogen-says/

and I worry about the side effects of steroids....

To roid or not to roid...

Oh, steroids.

I wish I could say I haven't update in a while because I've been out and about feeling fabulous. Not the case.

I can never bitch about steroids enough. I absolutely hate them. Last time I talked to you all I was tapering down but I think I was in denial about the return of some of my symptoms just because I was so anxious about getting down to a lower dosage. I'd say as soon as I got below 30MG I was feeling much different as far as my Crohn's symptoms. Not to mention the fact that I went from feeling like I was on speed (not that I would know) to only being able to stay awake 6 hours a day. It's scary how fast your body develops a need for them and how hard it is to taper down even at a slow pace.

So I saw my GI this week and based on my symptoms we decided to increase back up to 40MG a day until I see some sort of improvement on Tysabri. I am okay with this just because I've really started to live my life again and it was hard for a couple weeks when I was feeling not so great to not be able to do those little things that make me feel human. I think an important part of recovery is just getting out of the house and being independent. After not having that for so long, I need it.

Last week I got to return to my old stomping grounds in Maryland to see my very best friend, Claire. It was awesome because I used to travel down there at least once a month after graduating college and due to being sick, I hadn't been back in a year and a half! It also helped me realize how many of my symptoms had returned that I was continuing to ignore. When you are driving 3 hours and spending time away from your comfort zone, it's like a slap in the face. Once you don't have your normal routine and crutches to rely on, you take a step back and realize real damn fast what's going on. Sometimes I'll be doing something in the morning to prepare for a day out and I just stop and think to myself that it is extremely fucked up that I live this way. I don't know. Some things are just so second nature to me anymore that would seem really horrible to a normal person.

Anyway, I had a fabulous time hanging out with Claire's family, smoking black and milds, watching reality TV, and drinking gatorade. Yea, it takes a lot to entertain us! That's the wonderful thing about having good friends. The simplest things are fun enough and sometimes I really just need to keep it simple. After seeing Claire, I drove to another town in Maryland to see Jill and I think our whole time was spent walking around a mall. But it was oh so fun!

So I'll be going for my second Tysabri infusion on Wednesday and I'm really hoping I see some improvement after this one. Like I said before, if there's no improvement after infusion #3 then I'll have to stop taking it. I would really just love love love to be able to try the steroid taper again. I'm not looking forward to the effects of it but I just hate knowing I'm taking a medicine that is so darn bad for you.

I shall update again after my infusion and I'll be tweeting live from the infusion suite. My hope is that someone will actually read them and find it helpful. Minute by minute updates people! Get excited!!!

This week and other things

I am taking a break from some very intense Mario Brothers playing on Wii. I am absolutely addicted. I haven't really played Wii much since we got it but my brother, Liam, got me the new Mario and I feel like I am 12 again. I am getting frustrated and tempted to throw the controller through the screen. So yeah, I figured now would be a good time to set the game on pause.

In other random news, I've also become addicted to twitter. I've had a twitter account for quite some time now and never really understood the fascination until recently. I'm not one to update my facebook status much and I usually make fun of people who feel the need to divulge every single detail of their life via their status. But I feel like at least with twitter, people come there and expect random and trivial thoughts. When the Phillies Roy Halladay trade stuff was going down, I was on twitter constantly waiting to hear what people had to say and I think that's when I understood just how cool it is. It's a better forum for sharing both totally useless information and actual news stories as they break. My twitter is /sweener if you want to stalk me :) But please, follow me so I can follow you.

Also, my brother-in-law and sister, Nora, made a book for me on blurb.com with all of my blogs from the past year. It's really neat and resembles an actual book, complete with a picture of me on the back. They claim they didn't realize the color of the book they picked would be so brown-ish. But I think it adds character to a book with the title, "The Swollen Colon".

Anyway, in Crohn's-related business, I've been feeling okay. I was convinced for a couple days after my Tysabri infusion that it was working right away but it was more my head telling me I wanted to feel better. I think that's a good thing though because a few months ago I couldn't imagine myself being optimistic about anything treatment-wise. As much as I wanted to come on here and praise Tysabri as my next Remicade, I resisted. Really, I'm not sure what's going on. I just feel stuck in a rut. I'm not extremely ill and I am far from feeling like I could resume a normal life.

The good news is that I've felt comfortable enough this past week so drop my steroid dose down another 5 MG's and I will do the same again tomorrow. The week before I got my Tysabri I kept steady because I was feeling like absolute garbage. And as horrible as my energy is right now, I can deal with it. It's the intestinal symptoms that are the hard part. As long as they are manageable, I am comfortable decreasing the roids. So tomorrow I will be down to 20 MG, which is great because I expect some of the Prednisone side effects to diminish now.

Well, I think I took a long enough break to resume my Wii playing. My heart rate has gone down and I'm not all hyped up anymore. Who would have thought Mario could be so challenging?

The Big Day

I received my first Tysabri infusion this morning! I will admit I was very anxious, but not a nervous or scared anxious, just ready to get started and find out if this drug will work for me. I actually wasn't scared at all despite the fact that I had to sign over my life in what seemed like the millionth round of paperwork, this time to cover the ass of the hospital where I get my infusion.

I arrived for my appointment early to sign the stuff in my doctors office and then proceeded to the cancer center where the infusion suite is. My appointment was at ten but of course nothing could simply be a smooth ride. Even though I know the insurance approval went through already, the infusion site claimed they had no knowledge of this. So of course they had to call my insurance company and confirm this for themselves. It's understandable and considering the price of Tysabri I certainly wouldn't want to be surprised with a bill come January. Anyways, after they got the OK from my insurance company the pharmacy got going to prepare the drug.

I didn't get back to the actual infusion suite until 11:30 and like I have read online, the infusion itself only took one hour. They monitor you for an hour afterwards to make sure you don't have an allergic reaction. I am not sure if this is also the time frame in which PML would strike, but I would assume they look out for those symptoms, too. By 1:45 I was on my way out. I am thinking now that the first one is out of the way, the rest will go a little more smoothly and it won't take as long.

I am curious because I have not talked to anyone who has Crohn's and received Tysabri. From those I have heard of with MS, it took at least two infusions before they started to notice an improvement. I am not suspecting anything dramatic but I hope this allows me to smoothly transition off of steroids in the next couple of months. Last week I decided not to taper down because I've been having some pain and other symptoms. I just want to be roid-free and healthy.

Right now I am absolutely exhausted and looking forward to a good nights sleep. I am glad that finally, after all this time, I am on some kind of treatment that isn't steroids. It is crazy to think that right now as I type this, there is something completely beyond my comprehension trying to change my life.

Yay.

Five Days and Counting...

Today I finally got a phone call from my doctors office and the case manager who will be keeping tabs on me while I am taking Tysabri. After two and a half weeks of waiting, the insurance approval and paperwork all went through and I am cleared for my first infusion on Wednesday at 10 a.m. I had already filled out paperwork months ago when I originally considered starting Tysabri, so I was quite anxious and getting impatient that it was taking so long to get my appointment set.

For those of you not familiar, Biogen Idec is the company that makes Tysabri and you must enroll in a prescribing program called TOUCH if you want to receive the drug. Basically, because of the risks associated with Tysabri and the stringent requirements to receive the drug, the FDA mandated that all patients be followed closely while they are treated. This is to ensure that you are taking the drug correctly and the infusion site is monitoring any potential reactions, PML (progressive multifocal leukeoncephalopathy) being the most serious. I highly recommend you google "Tysabri" or "Natalizumab" and read about the drug history because it is quite interesting and will help you understand the decision I had to make.

What this means for me is that I should see some sort of improvement before twelve weeks or it is recommended I discontinue. Also, I must continue to wean off of steroids and be totally steroid free in six months, which I expect to be if I continue to taper off at the pace I am going. I am on 30 MG of steroids right now and I will be decreasing to 25 this Sunday. I have not noticed a significant change in my Crohn's symptoms compared to 40 MG but the decrease has certainly taken a toll on my energy levels. But that's another story.

So on Wednesday morning I will receive my first Tysabri infusion at Penn Presbyterian. It is some comfort that I am familiar with the infusion site and the nurses there from my time on Remicade. The infusion itself only takes an hour but I suspect that with the post-infusion monitoring and other stuff it'll take about 2 1/2 hours.

I am certainly nervous and I am sure I will be scared come Wednesday morning, but mostly I am just anxious to get the first one out of the way. I am trying not to think about it because really the hard part is over. I have read the small print and heard all the horror stories of the risks associated with Tysabri. The tough part of listening to everyone's opinions and considering my own doubts. Now it's just time for me to get better and I will be the happiest person alive if, by this time next year, I can say that Tysabri made 2010 better than 2009.

I am ready to turn a new leaf.