BCIR and Swimming and Being Alive

Something amazing happened a couple of weeks ago.

I went swimming.  In the ocean.  For the first time in...I can't remember.  My bff Anne is probably the last person who saw me in a Swimsuit circa 2000.  It's really been that long.

The backstory is that the boyfriend and I traveled to Maine to see one of his best friends get married.  It just happened that my family and his were both staying in the same town at the Jersey shore so once we left Maine we headed to Jersey.  I wasn't too enthusiastic about it but it ended up being a great time.  It was the first time in my life I could take a vacation that was paid for and I didn't have to worry about losing money from not working.

In my adult life I have never been a beach person.  I hate the sun, the sunburn that results from being pale and Irish, and the sand.  But one day on our vacation, I found myself thigh-deep in water with waves crashing on me while I watched my nephews being held by my brother in law.  After a while I said to myself, "fuck it".  Of course I didn't have a bathing suit but I didn't care.  I was already soaked.  I walked back to the beach where my family was stationed, ripped off the bandage covering my new, verrrry small stoma, and talked my brother into joining me in the water.

This is not to say I couldn't go swimming before.  Honestly, I never really attempted it.  I think I just convinced myself I didn't like the beach as a way to cope with my reality.  In the years with my ostomy, I certainly took baths and I knew I could find bathing suits that worked with me, but I just never shopped for them.  If I went to the beach I went in a tank and shorts and read or people-watched.

But that day, several weeks ago now, I swam in the ocean with my brother for an hour.  I watched my nephews as they were crushed with waves.  I watched my mom on the shoreline beaming with a wide smile as she took pictures of me....swimming.  My boyfriend (who spent his day golfing) was dumbfounded when I texted him after hours on the beach telling him that I was still there.  And that I went swimming.

Sometimes I feel guilty with my "new" life, because I would have been fine spending the rest of my life with an ostomy---really.  But there is a sense of freedom I never thought imaginable; one that has made me certain I made the right decision.  I could not imagine life another way.

I suppose I need to find a bathing suit for next season.  Until then...

xoxo

Hurry Up and Wait

Often throughout my time being sick, I have always been counting down the days until an important event. Sometimes it's been a doctors appointment where I knew big decisions were going to be made. My sophomore year of college it was a countdown until the end of the semester when I would have my colostomy reversed. These past couple of years it's been wishing for time to go faster so I could reach the time period alloted for whatever new therapy to begin "working". During these waiting periods, I've never been able to enjoy anything else that was happening in the present.

I figure in the past nine years with Crohns, I have wanted time to go faster more often than not. The big events of your life when you're dealing with illness are not like most where there's certainty in the reward waiting for you at the end. With chronic illness the waiting games are torture and you never know if the result will be worth the agony and exhaustion it takes just to endure the exams, medicines, and appointments. And even when there is good news waiting on the other side, it just means that you've bought some extra time. Nothing is ever certain.

Part of my decision-making lately has been thinking about all of the time in the past nine years I have lost because of Crohns. I wouldn't be able to live with myself, if, in ten years, I looked back on my twenties as a decade that should have been the time of my life. The time I've lost recently has been especially rapid. Everyone around me is moving and I'm just stuck in a rut where I'm standing still and I have nothing to show for it but the physical and mental effects of fighting a battle that can't be won. Part of me feels the defeat of this assault, but another feels victorious that the duration of this more recent struggle has allowed me to arrive at a place of acceptance.

I can see the light!

Feeling better after Remicade

During my first stint on Remicade, from 2005 to 2008, I was never one of those people that needed their next infusion. Of course I diligently kept up with my bi-monthly appointments but it was never a big deal when that time came around. Even when I started the drug, I did not see a drastic improvement like many people do. Instead, my turn-around was a gradual process that occurred over three months.

I started the drug in August after a summer where I pretty much lived in the hospital. And if I wasn't in the hospital, I was at a doctors appointment, trying to convince my doctor that I didn't need to be hospitalized. And then days after my twenty-first birthday, I started Remicade during one of my hospitalizations. After everything I had heard about people experiencing drastic improvements on it, I was optimistic. Every hour I spent out of the bathroom, without pain, or a craving for McDonalds, had me thinking, "Is this it? Is this Remicade working?" I wanted it to help me so much that I attributed every little positive moment with the magic that Remicade had to be working.

But I have learned with this illness that you can not look at your symptoms on a day by day or hour by hour basis to judge how you are feeling. Sure, the way you are able to perform your day to day activities is certainly going to determine if you are happy with your treatment, but you have to step back and take account of how you have been feeling over a long period of time. I have to remind myself of this all the time.

For instance, I feel like whenever I have doctors appointments, I happen to feel well at the time. And even though my symptoms are terribly upsetting to me sometimes, I often forget just how much they interfere with my life, because I'm so damn happy those few times when they don't. This can be a problem.

But back to my point about Remicade. I remember throwing myself into my spring semester in 2006 not having a clue about what was going to happen. At that point it had been four months since I started Remicade and I was getting better. But it is one thing to feel well when you are sitting at home and always in your comfort zone, or near it. It is another to return to school, live with strangers, and not have your support system around. And once I got my semester started, something about it felt different. I enjoyed going to class, living with five other girls, and being on campus. My health only improved and Remicade gave me three years of the most amazing time of my life.

Looking back on that situation, I can see that getting my first infusion of Remicade was a turning point in my life.

Now I am in a situation I'm confused with. When I began Remicade again this year, it was like night and day. The differences were felt immediately. This was certainly a different reaction than the reaction I experienced back in '05. I guess I am just trying to make the point that everything is unpredictable. No one can predict this disease, the drugs to treat it, or how our bodies react.

I was feeling like garbage this past month and then bam! I got Remicade on Wednesday and I've felt great since. Now I don't know why the last infusion didn't seem to help me or why this one did. But I know that taken on a whole, there has been so much inconsistency with my symptoms, even since the start of Remicade again. Even though I am so grateful for the fact that I do have good days now,I think if I were transplanted back to my college life of '06, I wouldn't be able to thrive as I did then. Remicade just isn't doing the same things for me this time.

I guess I'm just trying to get myself ready for this colonoscopy on Thursday. There will be so much to think about and a lot of decisions to be made. Taken with my symptoms and blood work over the past several months, the extent of inflammation my doc sees in my colon will likely determine if we continue on this course or come up with a new plan. Either way, it's a scary thought to abandon Remicade. I know it sounds crazy but I feel like I have an emotional attachment to it just because of the things I was able to accomplish when I was in remission.

Sympathy fasting on Wednesday??? ANYONE?????

Oh well. This guy certainly won't be fasting with Aunt Ellen. But I think his mom would agree she could use a break!

The State of Remicade

Today was another trip to Maryland for my infusion. It seems like the four weeks just flies by and before I know it, it's time to go back down again. This time I scheduled the appointment around noon because I really don't enjoy waking up so early to get down there. We left around 9 am and got there a little before 12. No matter how early I leave it never seems like its early enough because I'm always just barely making it there. I guess because I'm always going at different times I haven't quite gotten a sense of the perfect times to leave. And then coming back is always a question mark. Today we left Baltimore around 4 and barely ran into any traffic. We were home in Philly by 6. Strange.

Anyways, I haven't been feeling very well since all those obstruction episodes a couple weeks back. I haven't been able to do much, honestly. I feel like I get short of breath from walking up a flight of stairs and lightheaded with the slightest movement of my head too fast in any direction. That on top of my normal Crohn's symptoms has been a rough combination. But I am trying not to push myself too much because I have to take the GRE's on November 15 and I need to keep myself in good shape.

I briefly discussed some of my concerns with my doc via e-mail. Between my symptoms and the news I got after my MRI, it's pretty safe to say this colonoscopy is no longer being done to see if my colon is healthy enough to be reconnected. At this point my doctor wants it done to compare it to the one I had before I started Remicade again. Basically, if he does not see much improvement then we need to consider another therapy option.

Now you might be wondering, like a lot of people, why I would abandon Remicade if it made me feel better? And while it did improve my life drastically, I don't think it's enough anymore. My symptoms are still way too inconsistent for me to feel comfortable living a normal life. I think I was so happy about how I was feeling because it was some improvement, and nothing else therapy-wise had done anything to make me feel better. Also, I am now about two weeks steroid-free. And I definitely think there was something about the combination of a small dose of steroid and Remicade that clicked well. But I can't be on steroids forever, and certainly Remicade and 6-MP (Chemo drug which has been shown to extend the effectiveness of Remicade) should be able to make me feel better.

Now back to the scope and MRI. The scope next Thursday will give my surgeon a better idea about the extent of my fistulas. I read the report myself today and I have three of them, two of which are producing small pockets of infection. From my understanding it all depends on the location and size of the fistulas to see if they can be removed. Either way I am pretty sure I am going to need surgery to place the setons in, which I talked about last post.

Everything going on right now is very overwhelming. I feel like I came to a lot of conclusions about my life and I want to be able to carry out all these plans I've been thinking about the past couple of months. I am excited at the idea of possibly being in school next year, but if I do get accepted, I need to be healthy. I don't want it to be like some of my college years where I sometimes could barely even walk from class to class. I want to enjoy every minute of it this time.

I keep telling myself that if the scope next week shows things are still really bad, then I am ready mentally to have surgery, because I have exhausted a lot of my therapy options. I know surgery is the only thing that will give me consistency again. Lately when I go out with my sister somewhere or go for a walk, I think to myself....if having an ileostomy was the only thing I had to worry about each time I went out, I would be 100 times happier, because the problems associated with an ostomy are A LOT more manageable and infrequent than Crohn's problems. But it's a lot easier said than done...

Guess I'll be thinking about this a lot more come next week when I know for sure what's going on.

Candy Corn and Other Nonsense

Yesterday=longest day EVER

Anyone who lives on the east coast or has access to a TV knows how much rain we got Thursday night into Friday morning. Needless to say, between being paranoid I was going to oversleep and miss my Friday appointments and the loudness of the rain pelting at the windows, I didn't sleep, AT ALL, which made for an interesting day.

I left Philly around 5:30 AM and it was still pretty messy out. 95 was really hard to drive on actually and you could barely even see the lines on the highway. And forget about trying to pass a truck because the rain coming off these things made it impossible to see. But wonderfully it was towards the end of the storm and by the time I got to Baltimore I could see the sun...well, almost.

The infusion, MRI, and doctors appointment went smoothly. It just made for a VERY long day. My brother and I had to drive to Lancaster from Baltimore to pick a new (old) car my dad got from his work and then drive back to Philly. All-in-all it was an extremely long day but I slept like a rock once I got home.

Now of course nothing can ever be perfect when it comes to Crohn's. The week before my infusion I was doing FABULOUSLY. I mean, extremely well. For a week straight I had zero symptoms. That's probably the longest stretch of time in two years that I haven't been symptomatic. So obviously it got me very optimistic about this scope in November going well. But then, of course, I had to go and eat an apple.

And it was delicious. But I inhaled it. I had been babysitting all day so I didn't eat to avoid attending to Stevie and I was famished. I was thinking about that apple the whole day I was gone and I couldn't wait to eat it. I know it sounds silly but I just love apples and I haven't gotten to eat too many in the past year.

Well, I must have done a bad job chewing because I started getting symptoms of a blockage. Not to give too much detail but you can imagine that those kind of rubbish things we all eat do not really get broken down by our bodies so it's pretty much coming out of me the way it went in. That's why people with ileostomies and Crohn's in particular have to chew very well. Our intestines are sometimes swollen, thereby making it harder for food to pass. We often have scar tissue that likes to wrap around our bowels so the smoother our food is, the easier it is on our intestines.

It was about three days of varying pain. Sometimes it would be dull and other times it would be very sharp and unbearable. The good sign was that my ostomy was still active and functioning, so I knew my bowel wasn't completely blocked somewhere. I did start getting alarmed when I got a pounding headache and started throwing up, but I still didn't call my doctor. In retrospect, I probably should have, but I am so familiar with these things that I pretty much knew what I had to do. So I stopped eating solids for a day and took in A LOT of fluids. It took a lot longer than usual for whatever was stuck to pass but things definitely got flowing again and the pain went away JUST in time for my appointment yesterday.

So I mentioned this little hiccup to the doctor who administers my infusion. And you know what she did? SHE WROTE ME A PRESCRIPTION FOR PAIN MEDICINE.

WHAT. THE. FUCK.

She wrote the script like it was nothing. She told me she knew I wasn't in pain anymore but she wanted me to have it in case something like that happened again. She said there was no reason for me to be in any amount of pain or discomfort.

Now for those of you who don't know why I freaked out about that. Let me refresh your memory. Basically, for that whole year I was in bed, losing 50 pounds in 2 months, having my hair fall out, throwing up every day, crapping myself, being in the worst pain of my life, etc...well my doctor would not give me pain medicine. He didn't even suggest that I go to a pain management clinic or anything. It was pretty much, "We're going to treat your symptoms and if that doesn't help your pain then we need to try something else to treat your Crohn's". And you know what? That might be an OK philosophy for someone who is suffering from Crohn's and able to live their life with some adjustments, but when someone is drastically ill and spending weeks without even stepping outside their house, it's time to give out some friggen pills.

Ugh. I guess the whole thing just goes back to me having a lot of regrets about wasting as much time as I did with that practice. And I'll always think back and wonder if my disease would have progressed that far had I stayed with the doctor I am with now. It's something I beat myself up over all the time and I know I need to just put it behind me. I did what was easiest and made sense at the time.

When I was waiting for my MRI in the room where all the people actually getting MRI's are waiting in their little gowns, I was talking to this lady from Lansdale. Lansdale is a suburb of Philly. She was telling me how she, too, travels all the way to Baltimore for treatment because she loves her doctor so much and the care she gets there. And that was really comforting to me. Cause sometimes I think people think I'm crazy for traveling down there as much as I do. But really, I would tell anyone, that you can't put a price on a good doctor and I never realized that until recently. Even though I've had tons of bad doctors before I started going to the University of Maryland Medical Center, I just assumed afterwards that because I was going to a doctor who worked at a very reputable hospital that I'd be happy. And not to say anything bad about my doctor from last year but his style and his practice just didn't work out with me. It wasn't like I felt neglected or unmonitored, but they didn't have a holistic approach and I think that's what I like about Maryland.

Ok, so back to my point that I was trying to make before I rambled.

I just like that I feel very cared for right now. And that's how you should feel when you have a chronic illness.

That's all for now. Oh, and how great is candy corn?

Reflections on a year

Well Saturday was my twenty-sixth birthday. And it was fabulous.

Now on Friday I started getting really bad pains in my stomach and noticed I my output had almost completely stopped. I don't get worried about this until I start throwing up, and luckily it didn't get that far. But I was definitely experiencing some kind of blockage, which I experience every few months. And this time I pretty much knew what the culprit was.

PEANUTS! Now, peanuts and popcorn are some foods that you are told never to eat with Crohn's or diverticulitis. But my philosophy is that everyone's body is different and you should just work with trial and error philosophy. And of course I can't just eat a few peanuts or a few bites of popcorn. I gotta eat handfuls. And I am pretty sure the peanuts were the culprit. Even going into Saturday morning I was still feeling pain in my stomach that changed with how I would bend and move. Luckily by the afternoon after drinking a lot of water, I felt better.

So I went to the Phillies game with my friend Anne and some others, including my brother. I really had one of the best birthdays in a long time and was able to indulge in some tasty adult beverages. I don't know if it was the beer or having not eaten much all day but I made it through the game without any pain or problems. Woohoo!

I stole this pic from Anne:

This Friday also happens to be mine and Stevie's one year anniversary. I really can't believe it has been a year since my surgery and how much has changed. I remember how friggen sick I was that morning and I was probably down to 90 lbs. Let's just say I've probably put back on 30 pounds this past year and I'm comfortable with that. Of course I have other issues with my body that come along with losing/gaining so much weight in short amounts of time, but it beats being sick. As long as I feel strong, I am okay.

And I do feel strong, for the most part. My feelings about everything change along with the inconsistencies in my illness, unfortunately. Aside from the little blockage I experienced the other day, I've been eating and getting around fabulously. I can even eat fruits and vegetables. It's amazing. I had salad and watermelon today, salad and cantelope yesterday, and I will probably eat more salad tomorrow! It just feels good to have variety back in my life and I think it definitely has an impact on your mood when you aren't loaded with carbs and meat every day.

So that's what is going on right now. Just trying to stay positive and do things to get myself mentally back in the game.

Tomorrow there is another Phillies game on the agenda, and I couldn't be happier.

Infusion Day

Got my infusion yesterday in Maryland and all went well. It was the first time I received it in the new Digestive Center and I must admit, I love the set-up. They have the infusion suites in the same area as the doctors offices so I was able to follow-up with my GI and then get my infusion right away. It's good to be surrounded by nurses and doctors who know you, and vice-versa.

My doctor is still perplexed over my symptoms, and is convinced that I may have an enteroenteric fistula. After doing research on it and listening to my doctor, it does seem to be the most logical explanation for my symptoms and the fact that they virtually disappeared for three weeks after my last Remicade infusion (Remicade is known for being a great treatment for fistulizing Crohn's). Essentially, this means that there is an unnatural connection between my small and large bowels due to the damage caused by inflammation, whereby I'm eating food and it is bypassing a large portion of my digestive system, thus not exiting through my ostomy and rather still traveling through my colon, and also not being digested, at all.

So he really needs me to do a small bowel follow through test before my infusion next month. I'm not happy about this because my doctor in Philly tried to get me to do this and I just could not stomach the stuff you have to drink beforehand. And although he ruled out a fistula via catscan, my doctor doesn't think it is necessarily the best test to make a conclusion one way or the other. So I really need to get this done.

That's it for now. I am still feeling like crap. Today has actually been really bad. But hopefully I will feel okay tomorrow for my sisters baby shower. Now, time to go bake...

Infused

So I got my double-dose infusion of Remicade down at the University of Maryland in Baltimore on Friday. I left Philly around 9 for my appointment at noon and luckily didn't run into any traffic. Unfortunately to accomodate me in a hurry I got my infusion at the cancer center rather than my doctors office, which is where my frustrations boiled. I waited for two and half hours before they even started the damn thing. The upside, however, is that the cancer center is "state of the art" so there is a lot to entertain and keep you comfortable while you are sitting there. Each patient has their own section with recliners and a TV, which helps pass the time. After getting my pre-meds, I like to zone out and relax.

They also had a social worker from the hospital come by and talk to me. It was actually really nice because she was a younger woman and informed me about the various support groups at the hospital for cancer patients, people with Crohn's, ostomies, MS, etc. She was especially interested in connecting me with some younger people going through the same thing as me and I found it quite encouraging. I guess it was just nice to see that the hospital is concerned with helping people deal with the emotional aspect of chronic illness. I think our emotional health is overlooked too much by doctors even though it is a critical aspect of completely managing our health.

After my infusion, it was five-o'clock so I went out for some food and drinks with friends in Baltimore and didn't get back to Philly until 2 a.m. I really wasn't sure how I was going to feel so I was reluctant about making plans with anyone because even though I have an "excuse", I hate backing out of things last minute. Luckily I had been feeling good the past couple of days and I think I was riding an emotional-high just knowing that I finally got Remicade started again. One way or another, there is some kind of end in sight, whether it means I am healthy enough to be reconnected or I need to have another surgery.

And then Saturday came. And I felt great. Fantastic even. There were things different about my night of sleep on Friday that indicated to me that something was doing something. I can't even explain it. I told myself regardless of how I felt I would try to approach my day like I wasn't sick until there was reason to think differently. I just wanted to embrace a more positive attitude along with starting this treatment again.

And then today came. And I ate cucumbers and cherry tomatoes with my lunch. And as of five hours later, when I would normally be suffering the consequences of trying to put some variety in my diet, I was fine. Not an ounce of pain or lack of control despite the fact that I had eaten vegetables, and vegetables with seeds in them for that matter.

So I don't know. Is it the Remicade working? Who the hell knows. It certainly didn't work this fast the very first time I took it. But I also know that since my surgery in August, I haven't felt this kind of relief from anything, not even steroids. I was reluctant even to write anything about feeling well because until I have more days like this I will be waiting for something horrible to happen. But right now, in this moment, I know that I am going to wake up tomorrow and not worry about anything. I am just going to be me.

On my ride home from Baltimore late Friday night, I was wide awake. Even after being up for seventeen hours at that point, I was just happy. I can't describe how good it felt to be enjoying the moment with my friends rather than having the worry of my illness occupy my thoughts. And perhaps this is just a fluke. Only time will tell. But I also know the other side of illness, which will make you forget so damn fast about the pain you have felt. I can only hope to piece together one good day after another, until the pain of this part of my life is just a distant memory.

Happy Memorial Day.

More decisions

Last week I had a visit with my GI to discuss what is going on and decide if I should continue treatment with Tysabri. At that point, I hadn't been feeling well at all and had been in a lot of pain. We decided to discontinue this treatment.

My doctor confessed he was hoping I had been worn out enough to come to the conclusion that a proctocolectomy was needed. I wouldn't say he was surprised I wasn't "there" yet because he knows me well by now. But his matter of fact-ness about this kind of irked me. It's really not a decision I would ever hope to make in desperation. But I don't think anyone makes the decision in good health, either.

My biggest problem right now is that I have days where I feel fantastic and days when I feel like SHIT. The good is good but the bad is terrible. This is what makes my situation difficult. Just when I think that life, forever, with an ostomy is my best option for a fulfilling life, I start to feel better again and I think that maybe I should hold out hope that one day a cure will be found or I'll find a medicine like Remicade. Forget about the fact that maybe the ostomy is what is making me feel better. Instead, I get so focused on the need to reverse this thing as soon as an inkling of good health returns.

In many ways I just wish there was some consistency to this disease. I almost, ALMOST, wish I hadn't had those three years of health with Remicade because then I wouldn't be hopeful that the next treatment would send me into a similar remission. Every time I think about those years of my life and the normalcy it brought me, I am optimistic about medicine helping me get back there. I think anyone would prefer a medicine over an ostomy to bring them health.

Earlier this week I was convinced that I wanted to call my surgeon and schedule a consult for a proctocolectomy. I just want to live my life. I want to move on and do all of the things that I know are in store for me. I have so many plans, dreams, and goals for myself and sometimes I just get so mad at this thing that is out of my control dictating my life. I want the control back, and I know the ostomy would give me that. My problem? It's so effing permanent. And it's a big decision.

Thus my other problem. The bottom line is, this is my decision alone. Regardless of the support I have around me, I am the one who has to change something about my body for the rest of my life. I alone am the one who will have to explain this to friends and boyfriends and employers. No one else. Just me.

So the conclusion we made at the end of my GI appointment was to discontinue Tysabri and start Cimzia along with Imuran in five weeks. Yes. I have to wait ANOTHER five weeks before I can even begin these drugs and then wait two months to see if they actually work. To me this seems like a step backwards to be trying more Anti-TNF drugs and Imuran, which I've also been on in the past. It just adds to the feelings I have that I'm wasting my time for absolutely nothing. Even my doctor agreed he is not optimistic at all about Cimzia working for me.

In the meantime, I've decided to seek a second opinion from my old doctor in Maryland. I really want his opinion before I try this new medicine or opt for surgery. This needs to be done either way so I might as well get it out of the way while I wait around. My appointment at the University of Maryland Medical Center is on the 23rd. I am actually a bit excited because I think a new set of eyes to look at my condition will help. And I am encouraged at the prospect of those doctor agreeing that maybe the temporary-ness of the ostomy I have now could be improved with a revision.

I honestly feel that if my doctor in Maryland tells me I need to have a proctocolectomy then I might be ready to take that step. It's just a matter of hearing it from someone else, I guess.

New Orleans and beyond

I highly recommend that you all stop what you are doing right now and plan a trip to New Orleans. I'm sure my best friend, Claire, will let you stay with her! In all seriousness, I had an absolutely fabulous time last week visiting her.

I really didn't feel well at all last weekend but I spent a couple of days in bed and drank lots of water and things seemed to resolve on their own. I've noticed I go through these bouts sometimes. They aren't flare ups but I suspect that somewhere I am blocked up a little bit. I can tell this based off of the difference in pain and the quickness in which the problem is resolved. It's usually just a couple of days where I really feel like garbage and can't do much. Anyway, I was obviously quite concerned because I wanted things to be okay once I left for my trip on Monday.

Everything went smoothly during my travels and I really didn't have many problems despite the fact that several adult beverages were consumed. The highlight of the trip was definitely St. Patrick's day and I really can't imagine how much more insane it is down there for Mardi Gras. The energy of everyone is very contagious and you can't help but fall in love with the culture. I really wish I was better at taking pictures but unfortunately I haven't been so great with that lately so I have nothing to show you.

I will admit I was a little nervous about the prospect of being chosen by TSA for additional screening. I've noticed that the TSA in Philadelphia is a lot more lax when it comes to things than the rest of the country. On my way back here, the TSA in New Orleans scanned my bag four times. Keep in mind that in Philly they didn't look twice at it. It seems quite ridiculous because if they notice something suspicious the first time they should just inspect in right then as to not draw even more attention to that person. So naturally they had to pull all the shit out of my carry on and put my business on blast in front of twenty people. Maybe I'm being dramatic but in the smaller airports things are a little closer and you are more likely to know what's going on around you. Anyway, that's my TSA rant. I really shouldn't complain. It could have been worse.

As far as my health, not much has changed. I see my doctor this week and I am honestly not sure if my symptoms have improved enough to continue Tysabri. I guess we will discuss that on Tuesday. In brighter news, I will be down to 15 MG of steroids tomorrow, which is the lowest I have been since I started them in November. However, I'm not sure if this is a sign of my improved health or merely the fact that I've gotten better at living far from one hundred percent.

We shall see...

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.

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!!!