I am tired. But I'm not sick. The past couple of days have been the first days in a while where I have just sat around not doing much. It's probably a good thing for me. I tend to judge how productive I am based on how many things I can cram into one day. Sometimes I over-do it. Lately I've been in a very predictable routine of exercise, studying, and nephew-obsessing. Sometimes, it's nice to just spend a whole day watching TV. I need to find a better balance and I think I am getting there. I am listening to my body and when I feel I can't do something, instead of doing it anyway, I'm resting.
I've all but eliminated going out with my friends. This is more-so because with my recent prognosis I am excited about the future so I am trying to do everything for myself that is going to ensure I get accepted to grad school. For once I am not bogged down with worrying how I am going to get through a day away from home or go out for a friends birthday. Now that those silly things are no longer a huge weight on my mind, I am free to think about the bigger picture beyond Crohn's. And I can just tell you; it's very damn exciting.
With how I am feeling at this moment, I think I will be okay even if this colonoscopy in November shows that I can't be reconnected. As long as I can continue being healthy, even with the ostomy, I am okay with that. Of course, if he is willing to reconnect me, that is another huge decision to make. But I will cross that bridge when I get there.
In other exciting news, I am down to 10 mg of Prednisone and not noticing any symptoms returning. This could be because the 6-MP has finally taken effect or that the Remicade just needed some time to get things really under control. I am going to taper really sssssllllloooowwwwlllyyyy until I get down to 0. I can't believe I've been on them ten months now. And as excited I am to be free of steroids, I don't want to get anxious and taper too fast. Hopefully next time I will have a good report of being steroid-free. It definitely calls for a celebration.
So for now I will probably update again after my next Remicade infusion on the 1st of October (I think). I also get an MRI that day but I doubt it will show anything. Hope everyone is enjoying this weather. I love this time of year. Especially being HEALTHY at this time of year. Makes for great hikes in the park. And great walks with your nephew :)
My nephew, Braden Patrick, was born on September 9. He's truly the most
beautiful baby. I know that's what everyone is supposed to say, but he is. Right now he looks like a little old man and I just can't stop looking at him. He's all arms and legs and has a long torso. I've already decided he's going to be a future Michael Phelps.
I went down to Maryland on Friday to get my infusion and everything went great. Well, aside from having my brand new iPhone 4 stolen. But that's a whole other story and quite frankly I am sick of talking about it, because I'm sick over the concept of even letting my guard down enough to have something that expensive taken from me. But I guess after the news I had received at my appointment, my mind was understandably elsewhere.
So my appointment was at 9 o'clock but I missed the train at 6:53 which would have put me in Baltimore with an hour to meander around and get my morning coffee, some newspapers for the infusion, etc. So instead I caught the 7:45 and made it just in time to be 20 minutes late. I hate being late. Especially for doctors appointments. But it's probably the one instance in life where people expect lateness. Usually I just call the office when I am running late and they are accommodating because of the distance I travel to get there.
The first appointment was to check-up with my GI there. I don't see him in office every time I go down for an infusion. Mostly it's just the nurse practitioner taking notes about my symptoms, vitals, change in meds, etc. So it was nice to actually talk to my doctor about some sort of plan. I also knew since I had complained about the abscess a few weeks back that he would want to check that out. Ugh. So despite the fact that I am used to being poked and prodded in the most unflattering ways, it is still a production when I have to actually put the gown on and get "examined". I mean, most of the time I am prodded, it is done so under anesthesia or some kind of drugs to make me not care that a metal object is being put up my behind. So yea, I wasn't too happy about him needing to do a thorough exam of the area, but I knew it was necessary.
And I was glad that he did not see any evidence of the abscess remaining. The exam was very comfortable and it did not hurt so I knew everything was healed up. He could also see one small fistula that looked like it was unhealed, so that is something that is going to need to be studied further as the possible cause to the problems I get in that area, such as the abscess.
And then my doctor told me his plan. I am to keep taking the anti-biotic prescribed after my abscess scare and start tapering off of steroids again, this time at a slower pace as to not upset my body.
AND THEN, he said the magical word I thought I would never hear again, RECONNECTION! AH! Quite frankly I was surprised he would even talk about that possibility yet. Basically he told me he would like me to get the MRI done next time I go down for an infusion and then in two months I need to have another colonoscopy. Hopefully he will be able to dialate my bum to see how extensive this fistula is. But also, if my colon looks like the only remaining inflammation is simply diversion colitis and not crohn's colitis, then we can set up a meeting with a surgeon to talk about reconnecting me!!!
Talk about happy. Do you know the scene in Rudy when he reads his acceptance letter on the bench and he's got this quiet excitement. Like he wants to scream at the top of his lungs but he just composes himself and then gets up and runs. That's how I felt. I was trying so hard not to be cheesing it. And really, I do also understand that I still have some pretty shitty days which indicates my colon isn't as great as I would like it to be right now. So I am not totally getting excited that this is a possibility for the near future. But I'm hopeful. I really didn't think any doctor would even bring this up with me for months because of the way things have been. But I am glad my doc understands how important this is to me. I really do love my doctor!
So that's the plan. As I got my infusion, the nurse called and arranged for all my tests to be set up. I'll be getting my next infusion on October 1st along with my MRI. And then the following month, on November 4, I'll have my colonoscopy, which will hopefully yield some good news. As I was telling someone about this today, they asked me how many colonoscopies I've had and I just laughed. Not to be a medical-test snob, because they are a big deal, but I've just had so many I can't remember. The good news, however, is that by the time you get to whatever number it is that I'm at, you learn the tricks of the trade. You know, what you can get away with eating even the day before the test and how you don't really have to drink ALL that crap to clean your system out. And I'm rambling.
Okay, just had to share those updates. My sister is going to be induced on Tuesday. I will be an Aunt!!!!! I'll post some pictures next time. Did I mention I love my doctor?
Happy Labor Day.
My sister did not have her baby yet and hopefully she doesn't go into labor tomorrow, which is her due date, because I'll be in Maryland for a very short visit to get my infusion and see my doctor. I'm taking Amtrak down just so I don't have to deal with driving while groggy and hitting the Friday Labor Day traffic on the way home. I'm leaving at 7 AM and I should be back in Philly by 3:45! Amtrak is a bit on the pricey side but it only takes an hour to get down there and Penn station isn't very far from the hospital.
So I've decided to apply to a couple of programs in Public History and one in Historic Preservation. I really like the program in Historic Preservation but it is a lot harder to get into. Although, with this particular school, they don't require the GRE and instead of the typical one to two page personal statement, they like an eight page essay. I already started writing it and I'm really happy with what I've been able to write so far. For once in my life I feel like Crohn's is giving me an edge. I am certain there will be very few people who have been able to come to a conclusion about wanting a career in this field the way that I have. What I lack in work experience I certainly make up for in life experience. Finally, Crohn's is going to help me stand out from other people in a positive way.
The GRE class I am taking is really intense but I can see that it is helping. I get really frustrated with Math because quite honestly, I suck at it. And that's why I chose a college major like history. Supposedly in high school I got good grades in Math so I had all my college math requirements wavered, which is coming back to bite me in the ass because I don't remember anything. But even though I am not the best in Math, I feel like the course is at least helping me become a better test taker for this particular format.
Other than that, I had a really fabulous week. I finally feel like there's some consistency developing with how I feel. I've been able to string together a lot of good days, but I've also been trying to take better care of myself. I've been walking a lot and even starting to get some of my endurance back for running. I find that I'm never out of breath but my leg muscles are still very weak. You can forget about running uphill. It just can't happen. I should probably start doing other exercises to increase my strength. My problem is in the past I've always just ran and that was it. Sure, I'd mix in a few lunges and sit ups here and there but I could always just run and run and that was how I stayed fit.
This weekend is going to be great. I have a birthday party tomorrow night, the Red Bull Flugtag on Saturday (OMG), a first birthday party on Sunday, and the Phillies Monday night! And between all of this I could become an aunt.
And now it's time to download a movie on iTunes to watch tomorrow. Shamefully, I think I might download The Last Song. That should be mindless enough.