Number Two

Number two. Get it? Continuing the list of things that suck about being sick/having Crohn's.

2.

Everyone has an opinion.

One of the things that really sucks when you are sick is hearing other people tell you what you should and should not do. With Crohn's in particular, I think the misconceptions far outweigh what people actually know about it. And that's not to say that for the most part the people I come across don't have the best intentions. It just doesn't help that puke and shit and guts aren't exactly the best topics for friendly conversation. I can admit myself that I have downplayed the seriousness of this illness or the grossness of it just because it's not an easy thing to talk about. At all.

I think I can speak for all Crohn's sufferers when I say the most irritating thing is when people try to tell you what you shouldn't be eating. I do believe that diet has an effect on symptoms. It's a no brainer; when you have a digestive disease and you eat something that's harder for your body to break down, it's obviously going to cause more problems. However, I explain to people that I'm damned if I do and damned if I don't. Right now in this in between phase I seem to be in, I've been watching my diet stringently and have definitely felt better. But there are times I just count my losses and enjoy a salad or a beer or two, or ten (ha!), knowing that it might make me miserable.

Another thing I hear a lot is people comparing my situation to some friend of a friend who has Crohn's and tried this or that diet or medication or vitamin and found relief. What people don't understand is that this disease is very different for each person. Crohn's can affect everything from your mouth to your ass. There's a lot of intestine in between there and the differences in symptoms will vary greatly depending on which part of the bowel is involved. Therefore, everyone who suffers is different. Everyone has their own way they handle this and it can be quite frustrating when someone believes that because something worked for someone they know, it's going to work for you, too.

I think when all else fails, the best thing you can do for someone is be supportive. Empathy goes a long way with this thing even if you don't completely understand what you are being empathetic about. Just telling someone you're there for them or you can't imagine what they are going through is sufficient enough.

/end rant.

Tysabri #4 tomorrow. I'll let you know how it goes.

News flash: Chronic illness sucks

As if I don't complain enough on here. I've been thinking a lot recently about all the little things chronic illness does to make your life complete misery. You know, aside from the obvious things like pain and fatigue. I've gotten kind of bored with merely updating you on the yo-yoing of my illness. So here's the first of my list of things that suck about being sick. More to come.

1. The Ups and Downs

Certainly when you suffer from any illness or live with someone who does, there's a lot of emotional ups and downs. But the ups and downs I'm talking about here is weight. Weight can be quite a big issue when you have Crohn's. I've gained and lost 30+ pounds in a matter of months than more times than I can remember. This has inevitably left me with beautiful reminders all over my ass and back called stretch marks. Now, at this point I don't really care about them but they certainly aren't as character building as say, the scar on my abdomen. I wear that scar with pride (most of the time). But the stretch marks, ew.

Also, my wardrobe consists of clothes ranging in size 2-10. It's been a while since I've worn things in the higher end of that spectrum but I still keep those clothes around because you never know when you are going to blow up. Luckily I've managed to keep off the steroid 30 this time around. On the opposite end, the smaller sizes are clothes I wore in high school and my first year of college. They aren't exactly clothes that match the current trends nor reflect the fact that I am almost 26. But they fit me and I refuse to squander money on my credit card to buy clothes that may or may not fit me in a couple of months. I've also learned that each time you gain a significant amount of weight in a short amount of time, it doesn't go to the same places. 120 pounds will have you in different clothes each time. Sometimes your ass is bigger, sometime it's your legs. You just gotta try on that size 4 or 6 and hope it fits. If not, put on a loose shirt and you'll be the only one aware of the muffin top going on underneath.

In short, us Crohn's people never quite have a sense of self. Your body is constantly changing, people are constantly commenting on it, and you are constantly aware that weight is always going to be talked about at your next doctors appointment. They even have a nice line graph in my chart documenting my fluctuations in weight over the course of the past three years. I don't know about others with illnesses and Crohn's in particular, but as a young woman, it can be frustrating and it's never something I've been comfortable with. Maybe it's because of the fact that when I am healthy I like to take care of my body so the weight talk when I am unhealthy just reminds me of how it has changed and I don't quite have the same control. Regardless, I know that people have the best intentions when they comment on my weight and tell me how "healthy" I look. It's just not always the easiest way to hear it. I had a friend comment the other day that my eyes looked like there was finally life behind them and honestly that was the best comment I could have heard in regards to someone noticing that my condition has improved. I'd rather hear those things, like that I don't look as pale or my hair looks shinier or I look happy.

Anyways, that's all I am going to say about weight and I'll add more to the list at another time. In other news, I talked to my doctor yesterday about my symptoms and he thinks that while my improvement has been very minimal, he can allow me to get a fourth infusion of Tysabri under the condition that I keep tapering off steroids by 5 MG each week. Right now I am at 30 MG and I haven't noticed any sharp increase in symptoms so that is okay with me. He basically told me I have three options. We could go in and do a complete colectomy (which I'm not ready for), try Tysabri one more time, or wait a month and start Cimzia (another Anti-TNF which I probably won't respond to since I failed with Remicade and Humira). Obviously continuing Tysabri seems like the best choice out of all of them. I am hoping this infusion pushes me over the edge and I REALLY start seeing the relief I need.

Even though I am not at 100% I have been feeling great as far as my energy levels which has allowed me to become quite ambitious in the past couple of weeks. I'm going to visit my BFF Claire in New Orleans in two weeks, studying for the LSAT, and I'm joining a Field Hockey league with my other BFF Anne. Hopefully I can keep my optimism intact for all of these things I have planned. On the phone the other night my doctor told me he was looking forward to seeing me on the 30th and that we will hopefully be planning my next surgery, my reversal. Heck, if he is optimistic, I can be, too.

Waiting

Physically I have felt like garbage the past couple of days. Last weekend in particular was harsh and I found myself experiencing a different kind of pain than usual. This time it was more like a steady, sharp pain. It was far from excruciating but the level of pain changed as I adjusted how I was laying. These are often the pains I worry about because I have had similar pain experiences with all of my bowel obstructions. Whenever you twist and turn and your pain changes, you immediately think your bowel might be caught in a twist as well. At least that's how it's been for me in the past. Luckily I felt better after two days of laying in bed.

But then I have other pains usually in the early morning hours. From about 4 am on I am subject to a lot of cramping and my insides don't seem to settle down until anywhere from 10 am to 2 pm. During that time it is frustrating because I am in and out of sleep and I often cannot get more than a half hour of uninterrupted shut eye. Lately, however, I've been able to get on with my day as early as 9 a.m. which is much better than sitting around all afternoon waiting for things to quiet.

So here I am, waiting on Tysabri to take effect. This third infusion was supposed to be the magic number and I suppose in a couple weeks when I see my GI they will conclude that it isn't offering me any therapeutic benefit. Considering I am still on 40MG of steroids and unable to taper, I would have to agree at this point. We still do have a few weeks before we totally give up on it and I am trying to remain optimistic, but right now that is certainly hard to do. I imagine I should feel a significant improvement in my life like I did on Remicade and I am so far from it that there is no question in my mind this drug isn't cutting it at the moment.

The good news, if any, is that I haven't experienced any of the horrible headaches I got after all my other Tysabri infusions. That's quite a relief. But yes, that's the only good piece of news I can muster from this.

Anyway, on Thursday I went to support group again. I really haven't gone back since the first time, mainly because I wasn't feeling well and I was kind of discouraged with being the only person in their 20's at the meeting. But I figure if I have nothing else to do, I might as well socialize with people who are the closest to understanding what I am going through, even if they are in their 50s, 60s, and 70s. And, well, they are old people. And you know what? Sometimes old people say some funny shit.

I feel like often I offer more advice to others dealing with this then I get in return in the support group. Maybe this is because I am hung up on the fact that I have yet to meet another person in their 20's who is dealing with this. With this support group in particular, everyone but me had their surgery because of cancer. I try to relate to everyone but it can be hard. The reality is that most people don't die from Crohn's. I often wonder if the decision to have one's colon removed and opt for an ostomy is any easier when you know the alternative could be death. Either way, removal of the colon isn't always the ONLY option, but for cancer patients, it's often a better one when considering how it will aid doctors in administering chemo and/or radiation.

Sometimes I feel like a hypocrite when I offer my thoughts on having an ostomy to these people. I mean, how can I tell someone who is clearly distraught about it that it's not the end of the world and it will get better, all while my colon and rectum are still with me? Damaged they may be, but I have not had to endure their loss yet and that is a huge step that many of these people have had to come to terms with. Of course it's easy for me to say you can get through it because I have the hope of reconnection. For them, the decision has been made and there's no going back.

I don't know, as much as I tell myself I don't want to go to those meetings, I enjoy it. There's always a few married couples and one of them is supporting the other in their adjustment. The guy that started the group did it five years ago for his wife who had cancer. Then you have two friends who may come together just because it's their first meeting and they need the support. There's people contemplating this route surgery-wise or have it planned already who have no idea what to expect and desperately hang on every word spoken as to get any clue about what life might be like afterward. And then there's just individual people, like me, who live their lives because their life with an ostomy is a hell of a lot better than it was before. And after the initial shock of the surgery wears off, I think that's something everyone can agree on.

Another thing I realize at these meetings is that you just never know what people are going through in their lives. I think we sometimes assume that someone's misery in their life is going to be written across their face and the second they are in a crisis it will be evident. Sometimes I worry that people forget how sick I still am because the physical reminders are not so marked anymore. I guess my point is just to give people the benefit of the doubt. If you looked at me, you would never know I have an ostomy, never know about the past year of my life and the struggles I still go through every day. And while I try to never let my illness affect how I treat others, there are certainly times I have probably come off rude or curt to someone I've interacted with throughout my day simply because I did not feel well. Maybe I'm trying to say that I'd like to think most people in life have good intentions and you just never know what anyone is going through on a particular day.

I could easily throw up my arms right now and be sad about Tysabri not working. I won't lie, every day I get upset at least once about it. But the second my episodes are over or I know that I'll be okay to leave the house, I forget all about the pain, even if it was just a few hours before. It's pretty amazing to think how quickly you learn to adapt. The bottom line is, it's much easier to live your life when you can than to spend it being upset about the several hours a day that don't go right. Right now, I have about eight hours a day where I feel okay. And I'll take them happily cause it could be a lot worse.

Well, this was a bit all over the place but a lot happened this week that I am still digesting. Get it?

Tysabri Infusion #3

I just got home from my third Tysabri infusion. I must say it was quite an ordeal this time around. I was supposed to go on Wednesday but due to the weather they moved it to today and I'm pretty sure everyone else had their appointment moved to today as well. The thing with these infusions is that you don't want to wait any longer past your 28 days and understandably I wanted to get it in before the weekend. So while it took two hours before I was even registered, I'm glad I got it over with and was able to handle being at the hospital for five hours.

I think I'm going to be hyper-sensitive to my symptoms for the next couple of days and desperately searching for the slightest signs of improvement. I'm gonna keep doing my thing every day but hopefully things will be a lot easier and my mornings, which are typically the roughest, will start getting better.

As I've mentioned before, this infusion of Tysabri is do or die. If I don't see some improvement in the next couple of weeks then I won't be going for #4. I really haven't been able to get below 40 MG of steroids. At this point the steroids aren't doing much. I'm trying to think back to when I started taking them because I did profess that they were working. However, I don't know if I was simply content just to have some relief even if it was small or if they were actually doing more then. It's odd because sometimes I'm convinced I'm just taking a sugar pill because I don't really have the typical steroid side effects either. No crazy appetite, moon face, or mood swings. Maybe there's a conspiracy going on at my pharmacy from all the bitching I've done every time they've screwed my medicines up or didn't have things ready when they promised. Yea, let's just blame it on them.

Anyways, I'm looking forward to a low key Valentine's Day weekend. Nora, I wonder what Ryan is going to get us!?!?

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....